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itemprop="name">Information and support</span></h1><div class="subtitle">Ovarian cancer: identifying and managing familial and genetic risk</div><p><b>Evidence review A</b></p><p><i>NICE Guideline, No. 241</i></p><div class="half_rhythm">London: <a href="http://www.nap.edu/" ref="pagearea=meta&targetsite=external&targetcat=link&targettype=publisher"><span itemprop="publisher">National Institute for Health and Care Excellence (NICE)</span></a>; <span itemprop="datePublished">2024 Mar</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-5821-4</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2024.</div></div><div class="bkr_clear"></div></div><div id="niceng241er1.s1"><h2 id="_niceng241er1_s1_">Information and support</h2><div id="niceng241er1.s1.1"><h3>Review question</h3><p>What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</p><div id="niceng241er1.s1.1.1"><h4>Introduction</h4><p>Being diagnosed with an inherited increased risk of ovarian cancer is psychologically distressing. Those found to have a familial predisposition to ovarian cancer must deal with the knowledge that they are at a lifelong increased risk of developing ovarian cancer. Currently there is no effective surveillance, therefore women are offered risk reducing surgery which places them in a surgical menopause and impacts on their family planning. Despite this, the risk of ovarian cancer can never be reduced to nothing. As this risk is familial it is goes beyond the individual and impacts upon the wider family. Therefore, those found to have an inherited risk of ovarian cancer must explain this risk to their loved ones and encourage them to undergo testing that could have a profound impact on their lives.</p><p>Given these pressures those with familial ovarian cancer require information and support. Inherited risk is complicated as it is highly personalised and never absolute. As such, the information and the way it is delivered needs to be considered. Furthermore, given the risk is life long and dynamic, those found to have familial ovarian cancer may require lifelong support. Here we will discuss what information those with inherited ovarian cancer would find beneficial, the best way to deliver this information and what support these individuals need during their lives.</p></div><div id="niceng241er1.s1.1.2"><h4>Summary of the protocol</h4><p>See <a href="/books/NBK604385/table/niceng241er1.tab1/?report=objectonly" target="object" rid-ob="figobniceng241er1tab1">Table 1</a> for a summary of the Population, Phenomenon of interest and Context (PPCo) of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng241er1tab1"><a href="/books/NBK604385/table/niceng241er1.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img" rid-ob="figobniceng241er1tab1"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng241er1.tab1"><a href="/books/NBK604385/table/niceng241er1.tab1/?report=objectonly" target="object" rid-ob="figobniceng241er1tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol (PICo table). </p></div></div><p>For further details see the review protocol in <a href="#niceng241er1.appa">appendix A</a>.</p></div><div id="niceng241er1.s1.1.3"><h4>Methods and process</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>. Methods specific to this review question are described in the review protocol in <a href="#niceng241er1.appa">appendix A</a> and the <a href="/books/NBK604385/bin/NG241-Supplement1-Methods.pdf">methods</a> document (supplementary document 1).</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng241er1.s1.1.4"><h4>Qualitative evidence</h4><div id="niceng241er1.s1.1.4.1"><h5>Included studies</h5><p>Twenty-five qualitative studies were included in this review: <a class="bibr" href="#niceng241er1.s1.ref1" rid="niceng241er1.s1.ref1">Battistuzzi 2019</a>, <a class="bibr" href="#niceng241er1.s1.ref2" rid="niceng241er1.s1.ref2">Brain 2004</a>, <a class="bibr" href="#niceng241er1.s1.ref3" rid="niceng241er1.s1.ref3">Brunstrom 2016</a>, <a class="bibr" href="#niceng241er1.s1.ref4" rid="niceng241er1.s1.ref4">d’Agincourt-Canning 2006</a>, <a class="bibr" href="#niceng241er1.s1.ref5" rid="niceng241er1.s1.ref5">Dancyger 2010</a>, <a class="bibr" href="#niceng241er1.s1.ref6" rid="niceng241er1.s1.ref6">Dancyger 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref7" rid="niceng241er1.s1.ref7">Fadda 2020</a>, <a class="bibr" href="#niceng241er1.s1.ref8" rid="niceng241er1.s1.ref8">Foster 2002</a>, <a class="bibr" href="#niceng241er1.s1.ref9" rid="niceng241er1.s1.ref9">Gaba 2022</a>, Gleeson 2012, <a class="bibr" href="#niceng241er1.s1.ref11" rid="niceng241er1.s1.ref11">Hughes 2010</a>, <a class="bibr" href="#niceng241er1.s1.ref12" rid="niceng241er1.s1.ref12">Jeffers 2014</a>, <a class="bibr" href="#niceng241er1.s1.ref13" rid="niceng241er1.s1.ref13">Lifford 2013</a>, <a class="bibr" href="#niceng241er1.s1.ref14" rid="niceng241er1.s1.ref14">Lim 2004</a>, <a class="bibr" href="#niceng241er1.s1.ref15" rid="niceng241er1.s1.ref15">Mireskandari 2006</a>, Ormondroyd 2006, <a class="bibr" href="#niceng241er1.s1.ref17" rid="niceng241er1.s1.ref17">Pedrazzani 2022</a>, <a class="bibr" href="#niceng241er1.s1.ref18" rid="niceng241er1.s1.ref18">Ratnayake 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref19" rid="niceng241er1.s1.ref19">Samson 2014</a>, <a class="bibr" href="#niceng241er1.s1.ref20" rid="niceng241er1.s1.ref20">Seenandan-Sookdep 2016</a>, <a class="bibr" href="#niceng241er1.s1.ref21" rid="niceng241er1.s1.ref21">Shilling 2020</a>, <a class="bibr" href="#niceng241er1.s1.ref22" rid="niceng241er1.s1.ref22">Smits 2016</a>, <a class="bibr" href="#niceng241er1.s1.ref23" rid="niceng241er1.s1.ref23">Wakefield 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref24" rid="niceng241er1.s1.ref24">Wright 2018</a>, and <a class="bibr" href="#niceng241er1.s1.ref25" rid="niceng241er1.s1.ref25">Young 2019</a>. The studies provided data on the information and support needs of women with familial ovarian cancer or who are at increased risk of ovarian cancer and their families and carers. Data collection methods included: semi-structured interviews (<a class="bibr" href="#niceng241er1.s1.ref5" rid="niceng241er1.s1.ref5">Dancyger 2010</a>, <a class="bibr" href="#niceng241er1.s1.ref6" rid="niceng241er1.s1.ref6">Dancyger 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref8" rid="niceng241er1.s1.ref8">Foster 2002</a>, <a class="bibr" href="#niceng241er1.s1.ref10" rid="niceng241er1.s1.ref10">Gleeson 2013</a>, <a class="bibr" href="#niceng241er1.s1.ref13" rid="niceng241er1.s1.ref13">Lifford 2013</a>, <a class="bibr" href="#niceng241er1.s1.ref15" rid="niceng241er1.s1.ref15">Mireskandari 2006</a>, <a class="bibr" href="#niceng241er1.s1.ref16" rid="niceng241er1.s1.ref16">Ormondroyd 2012</a>, <a class="bibr" href="#niceng241er1.s1.ref18" rid="niceng241er1.s1.ref18">Ratnayake 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref19" rid="niceng241er1.s1.ref19">Samson 2014</a>, <a class="bibr" href="#niceng241er1.s1.ref20" rid="niceng241er1.s1.ref20">Seenandan-Sookdeo 2016</a>, <a class="bibr" href="#niceng241er1.s1.ref22" rid="niceng241er1.s1.ref22">Smits 2016</a>, <a class="bibr" href="#niceng241er1.s1.ref23" rid="niceng241er1.s1.ref23">Wakefield 2011</a>, <a class="bibr" href="#niceng241er1.s1.ref24" rid="niceng241er1.s1.ref24">Wright 2018</a>, <a class="bibr" href="#niceng241er1.s1.ref25" rid="niceng241er1.s1.ref25">Young 2019</a>), interviews (not otherwise specified) (<a class="bibr" href="#niceng241er1.s1.ref4" rid="niceng241er1.s1.ref4">d’Agincourt-Canning 2006</a>, <a class="bibr" href="#niceng241er1.s1.ref7" rid="niceng241er1.s1.ref7">Fadda 2020</a>, <a class="bibr" href="#niceng241er1.s1.ref9" rid="niceng241er1.s1.ref9">Gaba 2022</a>, <a class="bibr" href="#niceng241er1.s1.ref12" rid="niceng241er1.s1.ref12">Jeffers 2014</a>, <a class="bibr" href="#niceng241er1.s1.ref21" rid="niceng241er1.s1.ref21">Shilling 2020</a>), interviews and focus groups (<a class="bibr" href="#niceng241er1.s1.ref17" rid="niceng241er1.s1.ref17">Pedrazzani 2022</a>), focus groups (<a class="bibr" href="#niceng241er1.s1.ref11" rid="niceng241er1.s1.ref11">Highes 2010</a>) and open-ended questions (<a class="bibr" href="#niceng241er1.s1.ref14" rid="niceng241er1.s1.ref14">Lim 2004</a>). There were two different publications by <a class="bibr" href="#niceng241er1.s1.ref5" rid="niceng241er1.s1.ref5">Dancyger (2010</a> and <a class="bibr" href="#niceng241er1.s1.ref6" rid="niceng241er1.s1.ref6">2011</a>) it is likely but not explicitly stated that participants are the same.</p><p>See the literature search strategy in <a href="#niceng241er1.appb">appendix B</a> and study selection flow chart in <a href="#niceng241er1.appc">appendix C</a>.</p></div><div id="niceng241er1.s1.1.4.2"><h5>Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng241er1.appk">appendix K</a>.</p></div></div><div id="niceng241er1.s1.1.5"><h4>Summary of included studies</h4><p>Summaries of the studies that were included in this review are presented in <a href="/books/NBK604385/table/niceng241er1.tab2/?report=objectonly" target="object" rid-ob="figobniceng241er1tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng241er1tab2"><a href="/books/NBK604385/table/niceng241er1.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img" rid-ob="figobniceng241er1tab2"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng241er1.tab2"><a href="/books/NBK604385/table/niceng241er1.tab2/?report=objectonly" target="object" rid-ob="figobniceng241er1tab2">Table 2</a></h4><p class="float-caption no_bottom_margin">Summary of included studies. </p></div></div><p>See the full evidence tables in <a href="#niceng241er1.appd">appendix D</a>. No meta-analysis was conducted (and so there are no forest plots in <a href="#niceng241er1.appe">appendix E</a>).</p></div><div id="niceng241er1.s1.1.6"><h4>Summary of the evidence</h4><p>Nine main themes with a total of 58 subthemes relating to the information and support needs of women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families were identified through analysis of the included studies:
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<ul><li class="half_rhythm"><div>Deficiency in the information and support provided (9 subthemes)</div></li><li class="half_rhythm"><div>Need for support networks and support groups (3 subthemes)</div></li><li class="half_rhythm"><div>The role of the professional in providing information and support (7 subthemes)</div></li><li class="half_rhythm"><div>Tailor the delivery of information to suit the individual and their need and preferences (4 subthemes)</div></li><li class="half_rhythm"><div>Family as a source of information and support (6 subthemes)</div></li><li class="half_rhythm"><div>The impact of the family on decisions about genetic testing (7 subthemes)</div></li><li class="half_rhythm"><div>Impact of genetic risk information on emotions and decision making (12 subthemes)</div></li><li class="half_rhythm"><div>Importance of ovarian cancer surveillance programs and knowledge of surgical options (4 subthemes)</div></li><li class="half_rhythm"><div>Reasons for and against genetic testing (6 subthemes)</div></li></ul></p><p>The data from the included studies were synthesised and explored in a number of central themes and sub-themes (central themes shown in <a class="figpopup" href="/books/NBK604385/figure/niceng241er1.fig1/?report=objectonly" target="object" rid-figpopup="figniceng241er1fig1" rid-ob="figobniceng241er1fig1">Figure 1</a>; see <a href="#niceng241er1.appl">appendix L</a> for sub-theme maps).</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng241er1fig1" co-legend-rid="figlgndniceng241er1fig1"><a href="/books/NBK604385/figure/niceng241er1.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng241er1fig1" rid-ob="figobniceng241er1fig1"><img class="small-thumb" src="/books/NBK604385/bin/niceng241er1f1.gif" src-large="/books/NBK604385/bin/niceng241er1f1.jpg" alt="Figure 1. Qualitative theme structure." /></a><div class="icnblk_cntnt" id="figlgndniceng241er1fig1"><h4 id="niceng241er1.fig1"><a href="/books/NBK604385/figure/niceng241er1.fig1/?report=objectonly" target="object" rid-ob="figobniceng241er1fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Qualitative theme structure. </p></div></div><p>See also <a href="#niceng241er1.appl">Appendix L</a> for maps depicting only the main themes and each of the subthemes individually.</p><p>The quality of the review findings which ranged from low to high is summarised here according to the over-arching themes and sub-themes:
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<ul class="simple-list"><li class="half_rhythm"><div>Main theme 1: Deficiency in the information and support provided (evidence from 16 studies)
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<ul><li class="half_rhythm"><div>Subtheme 1.A: More information needed on cancer surveillance including CA-125 testing, and surgery (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 1.B: Need for more support following oophorectomy (low quality).</div></li><li class="half_rhythm"><div>Subtheme 1.C: More information needed on male genetic risk (high quality).</div></li><li class="half_rhythm"><div>Subtheme 1.D: More information needed on the benefits of genetic testing (high quality).</div></li><li class="half_rhythm"><div>Subtheme 1.E: More information and support needed on how and when to inform family members about genetic risk (high quality).</div></li><li class="half_rhythm"><div>Subtheme 1.F: More information and support needed on reproductive options (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 1.G: Self-seeking information from alternative sources (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 1.H: Feeling helpless due to a lack of available services (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 1.I: It should be easier to access the system (moderate quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 2: Need for support networks and support groups (evidence from 6 studies)
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<ul><li class="half_rhythm"><div>Subtheme 2.A: Value in a support network where you can share similar experiences (high quality).</div></li><li class="half_rhythm"><div>Subtheme 2.B: Stigma associated with support groups can be a barrier to joining (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 2.C: Desire for support that can be adapted to the individual and their needs (low quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 3: The role of the professional in providing information and support (evidence from 10 studies)
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<ul><li class="half_rhythm"><div>Subtheme 3.A: Communication with professionals was supportive and informative (high quality).</div></li><li class="half_rhythm"><div>Subtheme 3.B: Good to have professional support and advice when making decisions (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 3.C: Desire for more time and opportunities for discussion with professionals (high quality).</div></li><li class="half_rhythm"><div>Subtheme 3.D: Need for accurate information and advice from professionals (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 3.E: Feeling pressured by professionals to adopt risk management behaviours (low quality).</div></li><li class="half_rhythm"><div>Subtheme 3.F: Feeling unsupported by professionals (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 3.G: Desire for continuity and accessibility of care (moderate quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 4: Tailor the delivery of information to suit the individual and their need and preferences (evidence from 6 studies)
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<ul><li class="half_rhythm"><div>Subtheme 4.A: Desire for information to be offered in various formats, dependent on individual need and preference (high quality).</div></li><li class="half_rhythm"><div>Subtheme 4.B: Feeling overwhelmed when there is too much information (low quality)</div></li><li class="half_rhythm"><div>Subtheme 4.C: Preference for positive, hope giving information (low quality).</div></li><li class="half_rhythm"><div>Subtheme 4.D: Need for information to be communicated at the appropriate time (high quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 5: Family as a source of information and support (evidence from 11 studies)
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<ul><li class="half_rhythm"><div>Subtheme 5.A: Importance of the family as a source of support (high quality).</div></li><li class="half_rhythm"><div>Subtheme 5.B: Following information and advice provided by family members (low quality).</div></li><li class="half_rhythm"><div>Subtheme 5.C: Lack of communication and support in the family (high quality).</div></li><li class="half_rhythm"><div>Subtheme 5.D: Partner’s role in relaying information and providing support (high quality).</div></li><li class="half_rhythm"><div>Subtheme 5.E: Coping with a partner who has a genetic risk (low quality).</div></li><li class="half_rhythm"><div>Subtheme 5.F: Need for support at home after prophylactic oophorectomy (low quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 6: The impact of the family on decisions about genetic testing (evidence from 9 studies)
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<ul><li class="half_rhythm"><div>Subtheme 6.A: Decision-making influenced by family members’ experiences (low quality).</div></li><li class="half_rhythm"><div>Subtheme 6.B: Feeling obligated to have genetic testing to be able to inform family members about genetic risk (high quality).</div></li><li class="half_rhythm"><div>Subtheme 6.C: Feeling obligated to have genetic testing due to family/external pressures (high quality).</div></li><li class="half_rhythm"><div>Subtheme 6.D: Receiving unwanted information from family members about genetic risk (low quality).</div></li><li class="half_rhythm"><div>Subtheme 6.E: Family pressure to get tested due to the impact of genetic test results on children (high quality).</div></li><li class="half_rhythm"><div>Subtheme 6.F: Which family members are affected impacts mutation carrier risk perception (low quality).</div></li><li class="half_rhythm"><div>Subtheme 6.G: Decisions to get tested because of family member’s positive result (low quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 7: Impact of genetic risk information on emotions and decision making (evidence from 19 studies)
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<ul><li class="half_rhythm"><div>Subtheme 7.A: Knowledge of genetic test results seen as important and valuable (high quality).</div></li><li class="half_rhythm"><div>Subtheme 7.B: Genetic risk information relieves guilt associated with developing cancer (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 7.C: Positive genetic test results were unexpected and shocking (high quality).</div></li><li class="half_rhythm"><div>Subtheme 7.D: Not thinking through the impact of receiving genetic testing results (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 7.E: Regret about knowing genetic test results (low quality).</div></li><li class="half_rhythm"><div>Subtheme 7.F: Feeling at risk regardless of genetic test result (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 7.G: A sense of duty to pass on genetic test results to family members (high quality).</div></li><li class="half_rhythm"><div>Subtheme 7.H A culture of openness in families facilitated communication about genetic risk (low quality).</div></li><li class="half_rhythm"><div>Subtheme 7I: Difficulty in communicating genetic risk to family members (high quality).</div></li><li class="half_rhythm"><div>Subtheme 7.J: Coping with the emotions of genetic risk and the emotions of family members at the same time (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 7.K: Deferring genetic testing due to not wanting to know genetic risk at that time (low quality).</div></li><li class="half_rhythm"><div>Subtheme 7.L: Results of genetic testing did not influence decision making or behaviour (high quality).</div></li><li class="half_rhythm"><div>Subtheme 7.M: Results of genetic testing impacted on thoughts about childbearing (moderate quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 8: Importance of ovarian cancer surveillance programs and knowledge of surgical options (evidence from 4 studies)
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<ul><li class="half_rhythm"><div>Subtheme 8.A: Confidence in cancer surveillance for the detection of ovarian cancer (low quality).</div></li><li class="half_rhythm"><div>Subtheme 8.B: Good to have the option to continue surveillance (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 8.C: Clear knowledge of options available led to confident decisions to undertake surgery (moderate quality).</div></li><li class="half_rhythm"><div>Subtheme 8.D: Option of prophylactic oophorectomy came as a shock (low quality).</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 9: Reasons for and against genetic testing (evidence from 6 studies)
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<ul><li class="half_rhythm"><div>Subtheme 9.A. Empowerment and taking control of the situation (low quality).</div></li><li class="half_rhythm"><div>Subtheme 9.B: Getting tested for science (high quality).</div></li><li class="half_rhythm"><div>Subtheme 9.C: Feeling like they had missed previous opportunities to get tested (low quality).</div></li><li class="half_rhythm"><div>Subtheme 9.D: Being curious about family history (high quality).</div></li><li class="half_rhythm"><div>Subtheme 9.E: Do not believe in genetic testing (low quality).</div></li><li class="half_rhythm"><div>Subtheme 9.F: Believe cancer is caused by other factors (low quality).</div></li></ul></div></li></ul></p><p>See <a href="#niceng241er1.appf">appendix F</a> for full GRADE tables-CERQual tables.</p></div><div id="niceng241er1.s1.1.7"><h4>Economic evidence</h4><div id="niceng241er1.s1.1.7.1"><h5>Included studies</h5><p>A systematic review of the economic literature was conducted but no economic studies were identified which were applicable to this review question.</p><p>A single economic search was undertaken for all topics included in the scope of this guideline. See <a href="/books/NBK604385/bin/NG241-Supplement2-Economic-Literature-pdf.pdf">supplementary material 2</a> for details.</p></div><div id="niceng241er1.s1.1.7.2"><h5>Excluded studies</h5><p>Economic studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng241er1.appj">appendix J</a>.</p></div></div><div id="niceng241er1.s1.1.8"><h4>Summary of included economic evidence</h4><p>No economic evidence was identified which was applicable to this review question.</p></div><div id="niceng241er1.s1.1.9"><h4>Economic model</h4><p>No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.</p></div><div id="niceng241er1.s1.1.10"><h4>Evidence statements</h4><div id="niceng241er1.s1.1.10.1"><h5>Economic</h5><p>No economic evidence was identified which was applicable to this review question.</p></div></div><div id="niceng241er1.s1.1.11"><h4>The committee’s discussion and interpretation of the evidence</h4><div id="niceng241er1.s1.1.11.1"><h5>The phenomena of interest</h5><p>This review focused on the information and support needs of women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers. The committee discussed that there would be several qualitative themes that they would expect to emerge from the evidence. They thought that people may value information about genetic testing, what the genes are that increase risk, information about when they should seek help. They also thought that people may talk about the support that they require to deal with uncertainty and how to communicate with family members. The committee also thought that it would be good to know what type of support people felt they would need (for instance to deal with psychological impact). Another theme they thought that would be helpful in this context is how the knowledge of healthcare professionals about ovarian cancer could be used to address people’s needs. The committee decided not to make the list of potential themes exhaustive so that any other themes that identified information and support needs would be extracted. A number of themes that the committee expected did emerge from the evidence (for example communication with family members, information related to genetic testing and when and who to contact to access services); so these together with other themes emerging from the literature were discussed by the committee when developing recommendations.</p></div><div id="niceng241er1.s1.1.11.2"><h5>The quality of the evidence</h5><p>The evidence was assessed using GRADE-CERQual methodology and the overall quality ranged from low to high. Concerns about the methodological limitations of the studies were assessed with the CASP checklist and ranged from “moderate” to “none or very minor concerns”. The most common issues were the lack of explanation of recruitment approach, lack of justification for data collection and/or data saturation, a lack of consideration of the relationship between researcher and participants, no discussion of ethics approval and/or ethical issues in study methods, and limited information on data analysis including how presented data were selected and discussion of contradictory data. Concerns about relevance ranged from “minor” to “no or very minor”. For most review findings concerns were “no or very minor” as the context of the studies was not substantially different to the context of the review question. Concerns about coherence ranged from “minor” to “no or very minor”. For most review findings concerns were “no or very minor”, as there was no data that contradicted the findings nor any ambiguous data. A small number of review findings demonstrated minor concerns due to vaguely described data in the underlying body of evidence. Concerns about adequacy ranged from “serious” to “no or very minor”. There were serious and moderate concerns for review findings when some of the evidence offered thin data that was based on either one or two studies and a small number of participants. All other review findings were based on moderately rich data so there were minor concerns where review findings were based on evidence from a small number of studies and participants. The number of studies contributing to each subtheme ranged from 1 to 12.</p><p>Despite some of these quality concerns the committee felt that there was sufficient moderate to high quality evidence to base their recommendations on.</p></div><div id="niceng241er1.s1.1.11.3"><h5>Benefits and harms</h5></div><div id="niceng241er1.s1.1.11.4"><h5>Information and support about familial ovarian cancer in all settings</h5><p>The committee discussed the evidence from the main theme 1 and subthemes (deficiency in the information and support provided), which showed that people felt that the information and support provided to them is insufficient and would not allow them to make informed choices in shared decision making which is an essential component in clinical care (evidence was mainly moderate to high quality with a number of subthemes reaching saturation). Therefore, more information and support has to be given to meet their needs. Sometimes women expressed fear that they may be misled by inaccurate information (subtheme 3.D – moderate quality) and to address this the committee emphasised that information needs to be balanced and accurate so that women know they have the correct details to base decisions on. Whilst this was moderate quality evidence the committee felt that the accuracy and balance of information is essential in a shared decision-making process. Women also reported that they felt that there should be more time and opportunities for discussion (subtheme 3.C – high quality) and that they felt overwhelmed by the amount of information that they received in one visit and that the relevant information was not always given in the right context (subthemes 4.B and 4.D – low and high quality). To address these concerns the committee recommended that information should be available on an ongoing basis, when needed and that it is relevant to the person’s circumstances. It was noted that this may either be provided on an opportunistic basis in primary care or from the familial ovarian multidisciplinary team or other specialist services where applicable where people are already under the care of these services (see also below about evidence related to a recommendation on information related to how to access services). There was also evidence that information was not always sufficiently tailored to people’s needs, for example that the format of the information was not meeting their needs (main theme 3 and subthemes – mainly moderate to high quality). The committee discussed that there are many decisions to make, and to make informed choices people’s needs have to be taken into consideration and that this also relates to the <a href="https://www.legislation.gov.uk/ukpga/2010/15/contents" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Equality Act 2010</a> and accessible information standards. This not only related to moderate to high quality evidence but also to a legal duty therefore the committee made a strong recommendation specifically highlighting the tailoring of information to the person as an important factor in information provision.</p><p>Evidence from subthemes 1.H and 1.G (moderate quality) showed that women reported feeling helpless due to a lack of available services and did self-seek information from alternative sources to enable them to feel more confident in their knowledge when engaging in consultations with health professionals. Women also reported that it should be easier to access the system to get further advice if they needed it (subtheme 1.I). The committee agreed that this was consistent with their experience and that women should be given opportunities to review their decisions and that they should be made aware of the various options of how to access services for further discussions (including self-referral). Whilst an increase in accessing services would lead to more pressure on the system, the committee decided that people at risk of ovarian cancer have to make a number of decisions, for example related to genetic testing or risk-reducing surgery and that these decisions could be life-saving and despite pressures the committee felt that that a strong recommendation is needed so that information on how to access services is given.</p><p>There was also evidence about strong emotional or psychological components. The qualitative evidence demonstrated the emotional health needs of people and relatives affected by ovarian cancer or at risk of ovarian cancer. The evidence reached saturation regarding this topic as so many papers reported it (subtheme 7.J – moderate quality). There was also evidence about feeling unsupported by professionals and feeling under pressure (subthemes 3.E and 3.F – low and moderate quality). As a result, the committee encouraged healthcare professionals to ask people about their emotional health and psychological issues that may affect their ability to reach a decision, provide support if possible and if the level of emotional distress is high it may be necessary to refer the person to genetic counselling or psychological services. The committee acknowledged that a possible increase in referral to genetic counselling or psychological services would mean additional resources may be needed. However, they decided that it would be unethical to not refer people who are in a high level of emotional distress to the relevant service.</p><p>One subtheme specifically highlighted that people felt that there was insufficient information on male genetic risk (subtheme 1.C – high quality) and that people were not always aware that men could be carriers of pathogenic variants related to ovarian cancer even if they cannot develop ovarian cancer. The committee agreed that this needed to be addressed and recommended that information should be provided to raise.</p><p>There were some positive subthemes showing that people found communication with professionals supportive and informative and that people valued their advice (subthemes 3.A and 3.B – high and moderate quality). However, in contrast to this other people also mentioned that they felt pressured by professionals and felt unsupported (3.E and 3.F – low and moderate quality). The committee discussed this and thought that access to professionals and how welcoming the services are would have a big effect on how supported a person feels and so they recommended that services should be easily accessible and welcoming to everyone particularly people who may have additional support needs (for example people with language or communication difficulties, physical disabilities and such like). Whilst the quality ranged only from low to moderate making reasonable adjustments related to accessibility is a legal duty and therefore the committee made a strong recommendation.</p></div><div id="niceng241er1.s1.1.11.5"><h5>Key information about familial ovarian cancer (information in <a href="/books/NBK604385/table/niceng241er1.tab1/?report=objectonly" target="object" rid-ob="figobniceng241er1tab1">Tables 1</a> to 3)</h5><p>There was some discussion around inclusivity related to the subtheme specifically highlighting people felt that there was insufficient information on male genetic risk (subtheme 1.C – high quality). Whilst men may not realise that the guideline applies to them, trans women and non-binary people with male reproductive organs may not only lack awareness but may also experience other barriers to accessing services. The committee therefore thought that specific information for men, trans women and non-binary people with male reproductive organs should be provided to improve access to services and uptake of testing in these groups.</p><p>The committee was expecting themes around information about symptoms of ovarian cancer but no such theme or subtheme was identified. However, they felt that it was important that healthcare professionals provide such information so that the person seeks help when they notice symptoms or signs. They were aware that these were in another guideline and cross referred to <a href="https://www.nice.org.uk/guidance/cg122/chapter/guidance#detection-in-primary-care" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">the section on awareness of symptoms and signs in the NICE guideline on ovarian cancer</a> for what to look out for (BEAT as in Bloating, feeling full on Eating, Abdominal pain, Toilet changes).</p><p>The committee noted that people felt helpless about the availability of services (subtheme 1.H – moderate quality). They discussed that people are not always aware of what services are available to them and what the services do and why they may need to be referred to them. To address these feelings of helplessness the committee recommended that information is provided about pathways for risk assessment and referral to different services. Even though moderate quality the committee agreed that this was strongly recommended because people need to know the reason why they are being referred and what this means for them.</p><p>There were subthemes that highlighted emotional factors around feeling pressured (by healthcare professionals or family members – subthemes 1.E and 6.E which were both high quality) as well as feelings of guilt and stigma (subthemes 2.B and 7.B – moderate quality). The committee discussed that this places a psychological burden on the person which could lead to distress and anxiety. They therefore recommended that information and support about psychological factors such as anxiety, and psychological support services should be provided.</p><p>There was evidence that people had mixed feelings about support networks, which could be support groups or family members. They reported that they valued support networks where you can share experiences but other people felt that there was a stigma associated with joining support groups and that they felt that this could be a barrier (subthemes, 2.A and 2.B – high and moderate quality). There were also mixed feelings about the impact of the family on decisions. Theme 5 and subthemes related to the importance of family as a source of information and support (low and high quality). However, there were also feelings of obligation and pressure related to families (subthemes 6.B, 6.C and 6.E – high quality), but it was also mentioned that a culture of openness in families facilitated communication about genetic risk (subtheme 7.H – low quality). The committee agreed that information should be given about relevant support networks and organisations and that they should also ensure that people know that they can bring a family member if they wanted to. Providing this information will give the healthcare professional the opportunity to find out whether the person has feelings of pressure from their families or feel stigma around accessing support networks which can then be addressed. The committee decided information such as this is strongly needed and support organisations are available that people could be sign-posted to and it is a given that people should be made aware that they can bring a family member along, so they made a strong recommendation about this.</p><p>Evidence from theme 6 (low and high quality) showed that people came up with their own reasons for and against genetic testing and the committee felt that this may not always be based on knowledge and accurate information. They therefore recommended that in genetic services information needs to be provided about genetic testing (both predictive testing and mutation finding), including details of what genetic testing involves, what the tests mean and how informative they are likely to be, and the likely timescale of getting the results. This will enable the person to make an informed decision. Whilst this is not all based on high quality evidence the committee thought that this is already current practice and an essential part of clinical practice.</p><p>One main theme emerging from the evidence was about the impact of genetic testing on the family (theme 6 – low and high quality) and people also wanted more information on how and when to inform family members about genetic risk. The committee agreed that genetic services would be best placed to provide information about the importance of, and how to discuss, the results of assessment and testing with relatives, including different methods of contacting relatives about cascade testing. The committee noted that this is consistent with their experience and that such information is already part of the service that is provided.</p><p>There was evidence that people sometimes do not think through the impact of receiving genetic test results (subtheme 7.D – moderate quality). The committee therefore recommended that genetic services provide information about potential next steps depending on the risk assessment so that people feel that they are better prepared for what may happen when they get their results. They made this a strong recommendation because providing this information crucial so that the person can mentally prepare for what is to come.</p><p>The committee discussed the evidence that showed that people wanted more information about reproductive choices (subtheme 1.F – moderate quality). The committee agreed that providing this information should be the responsibility of specialist services for people who have a pathogenic variant or likely pathogenic variant. People can then make their reproductive choices taking into account the increased risks associated with their pathogenic variant and the timing of risk-reducing surgery. Whilst this was moderate quality evidence the committee decided that this information is needed because of the choices people face and therefore made a strong recommendation that this should be provided.</p><p>The committee noted that there was an entire theme with 4 subthemes as well as another subtheme relating to information about surveillance (main theme 8 – low to high quality - and subtheme 1.A – moderate quality). Whilst the committee acknowledged that more information on this is valued by people, they wanted the content of this information to be based on the effectiveness evidence for surveillance because there are uncertainties about whether or not it is effective (see evidence report K). They therefore did not base the recommendations related to this on the reported qualitative evidence.</p></div><div id="niceng241er1.s1.1.11.6"><h5>Cost effectiveness and resource use</h5><p>There was no existing economic evidence in this area. Therefore, the committee based the recommendations on qualitative evidence, their knowledge and experience and on existing NICE guidance.</p><p>The committee recognised that there is high variation across the NHS in information and support provision to people with familial ovarian cancer. The committee explained that most of the recommendations in this area outline good practice principles and better use of existing information and support services. As a result, some services may have to review how information and support is provided to people at risk of familial ovarian cancer or those with confirmed pathogenic variants and their family members or carers. This may result in additional costs, such as the time required to update existing information and to develop new materials, for example, to target and engage men. However, the committee agreed that these costs are likely to be negligible.</p><p>It was also discussed that appropriate and timely information and support could lead to people making more informed healthcare decisions. For example, appropriate information and support at the right time may mean an individual taking up risk reducing surgery, which will substantially reduce their cancer risk and associated healthcare costs.</p><p>Some recommendations may require additional healthcare professional time. For example, more time may be required to discuss people’s concerns and to enquire about their psychological and emotional issues.</p><p>Also, regular discussions of psychological and emotional problems could result in more referrals. However, it was discussed that addressing such problems early on could result in significant benefits to patients and cost savings to the NHS. For example, a lack of psychological support may prevent engagement with care, delay genetic testing or risk-reducing surgery uptake. All of these factors could result in higher overall long-term healthcare costs.</p><p>The committee highlighted the limited availability of specialist psychological services in certain regions. They noted that genetic counselling can help alleviate anxiety related to decision-making regarding genetic testing and risk-reducing surgery. However, the committee acknowledged that although genetic counselling may address certain psychological concerns, individuals may still experience ongoing emotional challenges related to their decisions and the impact on their family.</p><p>Considering the above, the committee emphasised the importance of a flexible approach that incorporates access to both psychological services and genetic counsellors. Ideally, people with psychological problems would be referred to specialist psychological services designed to deal with psychological issues arising due to genetic testing and risk management.</p><p>However, specialist psychological services are only available in certain regions. The committee explained, that where the development of specialist psychological services is still ongoing people could be referred to general psychological services. That is, services providing general mental health support not solely related to, for example, genetic testing and risk management.</p><p>The committee also discussed that ensuring access to genetic counselling may help alleviate the potential resource impact of referring people to specialist psychological services since appropriately trained genetic counsellors are equipped to address some of these issues effectively. The committee explained that genetic counselling is current practice in all services.</p><p>The committee discussed that only some men are currently accessing and engaging with genetic services. Raising awareness that men can be affected too will potentially mean that more men will access and use, for example, specialist genetics services and support groups.</p><p>As a result, there may be more pressure on existing services. However, the committee explained the importance of identifying carrier female relatives of men, as these individuals are at increased cancer risk. Identifying carrier female relatives of men will ensure timely and appropriate care, with potential cost savings to the NHS due to prevented cancers and associated costs.</p><p>The committee discussed that offering remote clinics or online appointments would benefit accessibility to services by reducing patients’ need to travel to appointments in person. It was noted that most services are already operating a hybrid model of face-to-face and remote clinics and this would not require a reorganisation of services.</p><p>The committee also referred to existing NICE guidelines regarding people’s experience in adult NHS and social care services, shared decision making and fertility problems. The recommendations related to these guidelines should already be implemented and would not require additional NHS resources.</p></div><div id="niceng241er1.s1.1.11.7"><h5>Other factors the committee took into account</h5><p>The committee noted that NICE guidance exists on providing information and support (including communication with the person and tailoring information to the person’s needs) and so they cross referred to the relevant sections of the <a href="https://www.nice.org.uk/guidance/cg138" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s guideline on patient experience in adult NHS services</a>, <a href="https://www.nice.org.uk/guidance/ng86" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s guideline on people’s experience in adult social care services</a> and <a href="https://www.nice.org.uk/guidance/ng197" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s guideline on shared decision making</a>.</p></div></div><div id="niceng241er1.s1.1.12"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.2.1 to 1.2.6 as well as bullet points 3, 6, 9-12 in Table 1, bullet points 3 to 5 in Table 2 and the section on reproductive choices in Table 3 in the NICE guideline.</p></div></div><div id="niceng241er1.s1.rl.r1"><h3>References – included studies</h3><ul class="simple-list"><div id="niceng241er1.s1.rl.r1.1"><h4>Qualitative</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref1"><p id="p-455">
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<strong>Battistuzzi 2019</strong>
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</p>Battistuzzi, Linda, Franiuk, Marzena, Kasparian, Nadine
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et al. (2019) A qualitative study on decision-making about BRCA1/2 testing in Italian women. European journal of cancer care
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28(5): e13083
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[<a href="https://pubmed.ncbi.nlm.nih.gov/31056822" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31056822</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref2"><p id="p-456">
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<strong>Brain 2004</strong>
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</p>Brain, K., Gravell, C., France, E.
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et al. (2004) An exploratory qualitative study of women’s perceptions of risk management options for familial ovarian cancer: Implications for informed decision making. Gynecologic Oncology
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92(3): 905–913
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[<a href="https://pubmed.ncbi.nlm.nih.gov/14984959" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14984959</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref3"><p id="p-457">
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<strong>Brunstrom 2016</strong>
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</p>Brunstrom, Kate; Murray, Alexandra; McAllister, Marion (2016) Experiences of Women Who Underwent Predictive BRCA1/2 Mutation Testing Before the Age of 30. Journal of genetic counselling
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25(1): 90–100 [<a href="https://pubmed.ncbi.nlm.nih.gov/25983051" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25983051</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref4"><p id="p-458">
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<strong>d’Agincourt-Canning 2006</strong>
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</p>d’Agincourt-Canning
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L (2006) Genetic testing for hereditary breast and ovarian cancer: responsibility and choice. Qualitative health research
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16(1): 97–118
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[<a href="https://pubmed.ncbi.nlm.nih.gov/16317179" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16317179</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref5"><p id="p-459">
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<strong>Dancyger 2010</strong>
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</p>Dancyger, C., Smith, J.A., Jacobs, C.
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et al. (2010) Comparing family members motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: A qualitative analysis. European Journal of Human Genetics
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18(12): 1289–1295
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[<a href="/pmc/articles/PMC3002862/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3002862</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20648056" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20648056</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref6"><p id="p-460">
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<strong>Dancyger 2011</strong>
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</p>Dancyger, Caroline, Wiseman, Mel, Jacobs, Chris
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et al. (2011) Communicating BRCA1/2 genetic test results within the family: A qualitative analysis. Psychology & Health
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26(8): 1018–1035
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[<a href="https://pubmed.ncbi.nlm.nih.gov/21797732" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21797732</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref7"><p id="p-461">
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<strong>Fadda 2020</strong>
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</p>Fadda, Marta, Chappuis, Pierre O, Katapodi, Maria C
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et al. (2020) Physicians communicating with women at genetic risk of breast and ovarian cancer: Are we in the middle of the ford between contradictory messages and unshared decision making?. PloS one
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15(10): e0240054
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[<a href="/pmc/articles/PMC7544052/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7544052</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/33031463" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33031463</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref8"><p id="p-462">
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<strong>Foster 2002</strong>
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</p>Foster, C, Watson, M, Moynihan, C
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et al. (2002) Genetic testing for breast and ovarian cancer predisposition: cancer burden and responsibility. Journal of Health Psychology
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7(4): 469–484
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[<a href="https://pubmed.ncbi.nlm.nih.gov/22112756" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22112756</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref9"><p id="p-463">
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<strong>Gaba 2022</strong>
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</p>Gaba, Faiza, Goyal, Shivam, Marks, Dalya
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et al. (2022) Surgical decision making in premenopausal BRCA carriers considering risk-reducing early salpingectomy or salpingo-oophorectomy: a qualitative study. Journal of medical genetics
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59(2): 122–132
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[<a href="/pmc/articles/PMC8788252/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8788252</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/33568437" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33568437</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref10"><p id="p-464">
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<strong>Gleeson 2013</strong>
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</p>Gleeson, Margaret, Meiser, Bettina, Barlow-Stewart, Kristine
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et al. (2013) Communication and information needs of women diagnosed with ovarian cancer regarding treatment-focused genetic testing. Oncology nursing forum
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40(3): 275–83
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[<a href="https://pubmed.ncbi.nlm.nih.gov/23619104" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23619104</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref11"><p id="p-465">
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<strong>Hughes 2010</strong>
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</p>Hughes, Lisa and Phelps, Ceri (2010) “The bigger the network the bigger the bowl of cherries…”: exploring the acceptability of, and preferences for, an ongoing support network for known BRCA 1 and BRCA 2 mutation carriers. Journal of genetentioninging
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19(5): 487–96 [<a href="https://pubmed.ncbi.nlm.nih.gov/20411314" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20411314</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref12"><p id="p-466">
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<strong>Jeffers 2014</strong>
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</p>Jeffers, Lisa, Morrison, Patrick J, McCaughan, Eilis
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et al. (2014) Maximising survival: the main concern of women with hereditary breast and ovarian cancer who undergo genetic testing for BRCA1/2. European journal of oncology nursing: the official journal of European Oncology Nursing Society
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18(4): 411–8
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[<a href="https://pubmed.ncbi.nlm.nih.gov/24731853" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24731853</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref13"><p id="p-467">
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<strong>Lifford 2013</strong>
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</p>Lifford, Kate J, Clements, Alison, Fraser, Lindsay
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et al. (2013) Catalysts to withdrawal from familial ovarian cancer screening for surgery and reactions to discontinued screening: a qualitative study. Familial cancer
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12(1): 19–26
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[<a href="https://pubmed.ncbi.nlm.nih.gov/23014947" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23014947</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref14"><p id="p-468">
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<strong>Lim 2004</strong>
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</p>Lim, Jacqueline, Macluran, Mariette, Price, Melanie
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et al. (2004) Short- and long-term impact of receiving genetic mutation results in women at increased risk for hereditary breast cancer. Journal of genetic counceling
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|
13(2): 115–33 [<a href="https://pubmed.ncbi.nlm.nih.gov/15612172" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15612172</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref15"><p id="p-469">
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<strong>Mireskandari 2006</strong>
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</p>Mireskandari, S., Meiser, B., Sherman, K.
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et al. (2006) Evaluation of the needs and concerns of partners of women at high risk of developing breast/ovarian cancer. Psycho-Oncology
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15(2): 96–108
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|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15880639" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15880639</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref16"><p id="p-470">
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<strong>Ormondroyd 2012</strong>
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</p>Ormondroyd, Elizabeth, Donnelly, Louise, Moynihan, Clare
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et al. (2012) Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis. European journal of human genetics: EJHG
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20(1): 4–10
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[<a href="/pmc/articles/PMC3234514/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3234514</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/21811309" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21811309</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref17"><p id="p-471">
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<strong>Pedrazzani 2022</strong>
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</p>Pedrazzani, C., Aceti, M., Schweighoffer, R.
|
|
et al. (2022) The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband-Provider and Proband-Family Communication in Hereditary Breast and Ovarian Cancer. Journal of Personalized Medicine
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|
12(8): 1249
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[<a href="/pmc/articles/PMC9409642/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC9409642</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/36013197" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 36013197</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref18"><p id="p-472">
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<strong>Ratnayake 2011</strong>
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|
</p>Ratnayake, Paboda, Wakefield, Claire E, Meiser, Bettina
|
|
et al. (2011) An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations. Familial cancer
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10(1): 97–105
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[<a href="https://pubmed.ncbi.nlm.nih.gov/20878485" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20878485</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref19"><p id="p-473">
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<strong>Samson 2014</strong>
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</p>Samson, A, DiMillo, J, Theriault, A
|
|
et al. (2014) Living with the BRCA1 and BRCA2 genetic mutation: learning how to adapt to a virtual chronic illness. Psychology, health & medicine
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|
19(1): 103–14 [<a href="https://pubmed.ncbi.nlm.nih.gov/23607692" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23607692</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref20"><p id="p-474">
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<strong>Seenandan-Sookdeo 2016</strong>
|
|
</p>Seenandan-Sookdeo, Kendra-Ann I, Hack, Thomas F, Lobchuk, Michelle
|
|
et al. (2016) Parental Decision Making Regarding the Disclosure or Nondisclosure of a Mutation-Positive BRCA1/2 Test Result to Minors. Oncology nursing forum
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|
43(3): 330–41
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|
[<a href="https://pubmed.ncbi.nlm.nih.gov/27105194" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27105194</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref21"><p id="p-475">
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<strong>Shilling 2020</strong>
|
|
</p>Shilling, V., Catt, S., Jenkins, V.
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|
et al. (2020) Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing. Breast Cancer Research and Treatment
|
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184(2): 491–498
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|
[<a href="/pmc/articles/PMC7599138/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7599138</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32812179" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32812179</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref22"><p id="p-476">
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|
<strong>Smits 2016</strong>
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|
</p>Smits, S, Boivin, J, Menon, U
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|
et al. (2016) The double-edged sword of ovarian cancer information for women at increased risk who have previously taken part in screening. Ecancermedicalscience
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|
10: 650
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|
[<a href="/pmc/articles/PMC4929978/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4929978</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27433283" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27433283</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref23"><p id="p-477">
|
|
<strong>Wakefield 2011</strong>
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|
</p>Wakefield, C.E., Ratnayake, P., Meiser, B.
|
|
et al. (2011) “For all my family’s sake, I should go and find out”: An Australian report on genetentioninging and testing uptake in individuals at high risk of breast and/or ovarian cancer. Genetic Testing and Molecular Biomarkers
|
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15(6): 379–385
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|
[<a href="https://pubmed.ncbi.nlm.nih.gov/21254855" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21254855</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref24"><p id="p-478">
|
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<strong>Wright 2018</strong>
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</p>Wright, Sarah, Porteous, Mary, Stirling, Diane
|
|
et al. (2018) Patie’t’’ Views of Treatment-Focused Genetic Testing (TFGT): Some Lessons for the Mainstreaming of BRCA1 and BRCA2 Testing. Journal of genetic counselling [<a href="/pmc/articles/PMC6209051/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6209051</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29752676" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29752676</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng241er1.s1.ref25"><p id="p-479">
|
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<strong>Young 2019</strong>
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</p>Young, Alison Luk, Butow, Phyllis N, Rhodes, Paul
|
|
et al. (2019) Talking across generations: Family communication about BRCA1 and BRCA2 genetic cancer risk. Journal of Genetic Counselling
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28(3): 516–532 [<a href="https://pubmed.ncbi.nlm.nih.gov/30694012" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30694012</span></a>]</div></p></li></ul></div></ul></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng241er1.appa"><h3>Appendix A. Review protocol</h3><p id="niceng241er1.appa.et1"><a href="/books/NBK604385/bin/niceng241er1-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 221K)</span></p></div><div id="niceng241er1.appb"><h3>Appendix B. Literature search strategies</h3><p id="niceng241er1.appb.et1"><a href="/books/NBK604385/bin/niceng241er1-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Literature search strategies for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 275K)</span></p></div><div id="niceng241er1.appc"><h3>Appendix C. Qualitative evidence study selection</h3><p id="niceng241er1.appc.et1"><a href="/books/NBK604385/bin/niceng241er1-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 217K)</span></p></div><div id="niceng241er1.appd"><h3>Appendix D. Evidence tables</h3><p id="niceng241er1.appd.et1"><a href="/books/NBK604385/bin/niceng241er1-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Evidence tables for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 610K)</span></p></div><div id="niceng241er1.appe"><h3>Appendix E. Forest plots</h3><div id="niceng241er1.appe.s1"><h4>Forest plots for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng241er1.appf"><h3>Appendix F. GRADE-CERQual tables</h3><p id="niceng241er1.appf.et1"><a href="/books/NBK604385/bin/niceng241er1-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">GRADE tables for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 497K)</span></p></div><div id="niceng241er1.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng241er1.appg.s1"><h4>Study selection for: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4><p>One global search was undertaken – please see <a href="/books/NBK604385/bin/NG241-Supplement2-Economic-Literature-pdf.pdf">Supplement 2</a> for details on study selection.</p><p>Economic evidence tables</p></div><div id="niceng241er1.appg.s2"><h4>Economic evidence tables for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng241er1.apph"><h3>Appendix H. Economic model</h3><div id="niceng241er1.apph.s1"><h4>Economic model for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng241er1.appi"><h3>Appendix I. Excluded studies</h3><div id="niceng241er1.appi.s1"><h4>Excluded studies for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4></div><div id="niceng241er1.appi.s2"><h4>Excluded effectiveness studies</h4><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng241er1appitab1"><a href="/books/NBK604385/table/niceng241er1.appi.tab1/?report=objectonly" target="object" title="Table 13" class="img_link icnblk_img" rid-ob="figobniceng241er1appitab1"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng241er1.appi.tab1"><a href="/books/NBK604385/table/niceng241er1.appi.tab1/?report=objectonly" target="object" rid-ob="figobniceng241er1appitab1">Table 13</a></h4><p class="float-caption no_bottom_margin">Excluded studies and reasons for their exclusion. </p></div></div></div><div id="niceng241er1.appi.s3"><h4>Excluded economic studies</h4><p>No economic evidence was identified for this review. See <a href="/books/NBK604385/bin/NG241-Supplement2-Economic-Literature-pdf.pdf">supplementary material 2</a> for further information.</p></div></div><div id="niceng241er1.appj"><h3>Appendix J. Research recommendations – full details</h3><div id="niceng241er1.appj.s1"><h4>Research recommendations for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</h4><p>No research recommendations were made for this review question.</p></div></div><div id="niceng241er1.appk"><h3>Appendix K. Qualitative themes</h3><p id="niceng241er1.appk.et1"><a href="/books/NBK604385/bin/niceng241er1-appk-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Qualitative themes for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 934K)</span></p></div><div id="niceng241er1.appl"><h3>Appendix L. Qualitative quotes</h3><p id="niceng241er1.appl.et1"><a href="/books/NBK604385/bin/niceng241er1-appl-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Qualitative quotes for review question: What information and support is needed by women with familial ovarian cancer or who are at increased risk of ovarian cancer (with or without breast cancer), and their families and carers?</a><span class="small"> (PDF, 386K)</span></p></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews underpinning recommendations 1.2.1 to 1.2.6 as well as bullet points 3, 6, 9 to 12 in table 1, bullet points 3 to 5 in table 2 and the section on reproductive choices in table 3 in the NICE guideline</p><p>These evidence reviews were developed by NICE</p></div><div><p><b>Disclaimer</b>: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.</p><p>Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.</p><p>NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the <a href="https://www.gov.wales/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Welsh Government</a>, <a href="http://www.scotland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Scottish Government</a>, and <a href="http://www.northernireland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Northern Ireland Executive</a>. All NICE guidance is subject to regular review and may be updated or withdrawn.</p></div><div class="half_rhythm"><a href="/books/about/copyright/">Copyright</a> © NICE 2024.</div><div class="small"><span class="label">Bookshelf ID: NBK604385</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/38896768" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">38896768</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng241er1tab1"><div id="niceng241er1.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol (PICo table)</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK604385/table/niceng241er1.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng241er1.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng241er1.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng241er1.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Women who:
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<ul><li class="half_rhythm"><div>carry a pathogenic variant that increases the risk of ovarian cancer, including in genes such as <i>BRCA1, BRCA2, RAD51C, RAD51D, BRIP1, PALB2, MLH1, MSH2</i> and <i>MSH6</i></div></li><li class="half_rhythm"><div>have a relative who carries a pathogenic variant that increases the risk of ovarian cancer, including in genes such as <i>BRCA1, BRCA2, RAD51C, RAD51D, BRIP1, PALB2, MLH1, MSH2</i> and <i>MSH6</i></div></li><li class="half_rhythm"><div>have a family history of ovarian cancer (with or without a family history of breast cancer)</div></li><li class="half_rhythm"><div>have a family history or a diagnosis of a syndrome associated with an increased risk of ovarian cancer, for example Lynch syndrome</div></li><li class="half_rhythm"><div>come from populations with an increased prevalence of pathogenic variants associated with ovarian cancer</div></li><li class="half_rhythm"><div>have ovarian cancer (with or without breast cancer)</div></li></ul>
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Family and carers of people at increased risk</td></tr><tr><th id="hd_b_niceng241er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Phenomenon of interest</th><td headers="hd_b_niceng241er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Potential themes include:
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<ul><li class="half_rhythm"><div>Uncertainty about prognosis & risk</div></li><li class="half_rhythm"><div>Communication about risks with family members</div></li><li class="half_rhythm"><div>Information about genetic testing process</div></li><li class="half_rhythm"><div>Information about possible genes involved</div></li><li class="half_rhythm"><div>Information about when to present (e.g., in high-risk patient group)</div></li><li class="half_rhythm"><div>Healthcare professionals’ knowledge of ovarian cancer</div></li><li class="half_rhythm"><div>When to seek help</div></li><li class="half_rhythm"><div>Who to contact [e.g. primary cancer team, community team]</div></li><li class="half_rhythm"><div>Information about types of treatment (decision making) – what’s involved and when to start, where treatment is carried out</div></li><li class="half_rhythm"><div>What happens next after treatment</div></li><li class="half_rhythm"><div>What’s safe/not safe to do</div></li><li class="half_rhythm"><div>New onset symptoms and who to contact</div></li><li class="half_rhythm"><div>Psychological support and impact, plus anxiety</div></li><li class="half_rhythm"><div>Type of support</div></li></ul></td></tr><tr><th id="hd_b_niceng241er1.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng241er1.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Included studies will be relevant for developing and improving information and support provided to women with familial ovarian cancer or who are at increased risk of ovarian cancer, and their families and carers, within a healthcare setting.</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng241er1tab2"><div id="niceng241er1.tab2" class="table"><h3><span class="label">Table 2</span><span class="title">Summary of included studies</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK604385/table/niceng241er1.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng241er1.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Themes applied after thematic analysis</th></tr></thead><tbody><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng241er1.s1.ref1" rid="niceng241er1.s1.ref1">Battistuzzi 2019</a>
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</p>
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<p>Italy</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=19</p>
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<p>Age, mean (SD), years: not reported; range: 25 to 39</p>
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<p>Women with a strong family history but no personal history of cancer who had CGC and <i>BRCA1/2</i> testing</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Genetic-counselling hospital services</p>
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<p><b>Data collection:</b> Semi-structured interviews</p>
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<p><b>Data analysis:</b> Inductive theoretical framework</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>The impact of the family on decisions about genetic testing</p>
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<p>Impact of genetic risk information on emotions and decision making</p>
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<p>Reasons for and against genetic testing</p>
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</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng241er1.s1.ref2" rid="niceng241er1.s1.ref2">Brain 2004</a>
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</p>
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<p>United Kingdom</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=10</p>
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<p>Age, mean (SD), years: not reported; range: 27 to 62</p>
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<p>Women newly identified as being at increased risk of developing familial ovarian cancer</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Not reported</p>
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<p><b>Data collection:</b> Semi-structured interviews</p>
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<p><b>Data analysis:</b> Constant comparative analysis</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Deficiency in the information and support provided</p>
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<p>Family as a source of information and support</p>
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<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
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<p>Importance of ovarian cancer screening programs and surgical options</p>
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</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<a class="bibr" href="#niceng241er1.s1.ref3" rid="niceng241er1.s1.ref3">Brunstrom 2016</a>
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</p>
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<p>United Kingdom</p>
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</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N= 7</p>
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<p>Age, mean (SD), years: not reported; range: 24 to 30</p>
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<p>Female <i>BRCA 1/2</i> carriers who had predictive testing before the age of 30</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting</b>: Cancer Genetics Service for Wales</p>
|
|
<p><b>Data collection</b>: Semi-structured interviews</p>
|
|
<p><b>Data analysis</b>: Thematic analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref4" rid="niceng241er1.s1.ref4">D’Agincourt-Canning 2006</a>
|
|
</p>
|
|
<p>Canada</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N= 53</p>
|
|
<p>Age, mean (SD), years: not reported; range: early 20s to 60s</p>
|
|
<p>Women and men who were eligible for and/or who had undergone genetic testing for hereditary cancer.</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Hereditary cancer programme</p>
|
|
<p><b>Data collection</b>: Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> An interpretive process guided by constant comparative techniques.</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Family as a source of information and support</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
|
|
<p>Reasons for and against genetic testing</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref5" rid="niceng241er1.s1.ref5">Dancyger 2010</a>
|
|
<sup>*</sup>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=30</p>
|
|
<p>Age, mean (SD), years: not reported; patients range: 34 to 71; relatives range: 20 to 65</p>
|
|
<p>10 patients and 20 relatives. Patients were female patients affected by breast or ovarian cancer who had received a positive result from a <i>BRCA1/2</i> mutation search</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Clinical genetics services</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Interpretative phenomenological analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref6" rid="niceng241er1.s1.ref6">Dancyger 2011</a>
|
|
<sup>*</sup>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=10 families (including 10 female patients and their 22 relatives)</p>
|
|
<p>Age, mean (SD), years: not reported; range: 20 to 71</p>
|
|
<p>Women affected by breast or ovarian cancer who had received a positive <i>BRCA1/2</i> result</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting</b>: National Health Service (NHS) clinical genetics services</p>
|
|
<p><b>Data Collection</b>: Semi-structured interviews</p>
|
|
<p><b>Data Analysis</b>: Interpretative phenomenological analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref7" rid="niceng241er1.s1.ref7">Fadda 2020</a>
|
|
</p>
|
|
<p>Switzerland</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=32</p>
|
|
<p>Age, mean (SD), years: not reported; ranges were: 26-35: n=8 36-49: n=21 50-60: n=3</p>
|
|
<p>Unaffected women carrying <i>BRCA1/2</i> pathogenic variants</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting</b>: Genetic-counselling hospital services</p>
|
|
<p><b>Data Collection</b>: Semi-structured interviews</p>
|
|
<p><b>Data Analysis:</b> Inductive approach guided by constant comparison</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The role of the professional in providing information and support</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref8" rid="niceng241er1.s1.ref8">Foster 2002</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=15</p>
|
|
<p>Age, mean (SD), years: not reported; median: 46, range: 33 to 62</p>
|
|
<p>Women at increased risk of developing breast and/or ovarian cancer due to their family history</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Genetics Clinic for predictive genetic testing</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Grounded theory</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Need for support networks and support groups</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions, decision making, and risk management</p>
|
|
<p>Reasons for and against genetic testing</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref9" rid="niceng241er1.s1.ref9">Gaba 2022</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=24</p>
|
|
<p>Age, mean (SD), years: not reported; range: 34 to 46</p>
|
|
<p>Premenopausal women at increased risk of Ovarian cancer (<i>BRCA1/BRCA2/RAD51C/RAD51D/BRIP1</i> carriers or due to a strong family history)</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Specialist high-risk familial cancer clinics, genetics, gynaecology/gynaecological oncology clinics</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Grounded theory approach</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Need for support networks and support groups</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Importance of ovarian cancer surveillance programs and knowledge of surgical options</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref10" rid="niceng241er1.s1.ref10">Gleeson 2013</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=22</p>
|
|
<p>Age, mean (SD), years: 57.2 (9.1)</p>
|
|
<p>Women diagnosed with ovarian cancer who were unselected for family history</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Genetics services and a Gynaecologic oncology department at a hospital</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Transcendental realism</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Tailor the delivery of information to suit the individual and their need and preferences</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref11" rid="niceng241er1.s1.ref11">Hughes 2010</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=17</p>
|
|
<p>Age, mean (SD), years: 49 (SD not reported); range: 24 to 77</p>
|
|
<p><i>BRCA1</i> and <i>BRCA2</i> mutation carriers who had been through diagnostic or pre-symptomatic genetic testing</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Not reported</p>
|
|
<p><b>Data collection:</b> Focus groups</p>
|
|
<p><b>Data analysis:</b> Thematical analysis (no details given)</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Need for support networks and support groups</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Tailor the delivery of information to suit the individual and their need and preferences</p>
|
|
<p>Family as a source of information and support</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref12" rid="niceng241er1.s1.ref12">Jeffers 2014</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=33 (In addition 4 health professionals and 3 relatives completed participant numbers)</p>
|
|
<p>Age, mean (SD), years: not reported; range: 29 to 68</p>
|
|
<p>Women with a personal history of hereditary breast and/or ovarian cancer who had tested positive for a <i>BRCA</i> mutation</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Regional genetics service</p>
|
|
<p><b>Data collection:</b> In-depth interviews (type not otherwise specified)</p>
|
|
<p><b>Data analysis:</b> Theoretical sampling</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref13" rid="niceng241er1.s1.ref13">Lifford 2013</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=21</p>
|
|
<p>Age, mean (SD), years: 48 (SD not reported); range: 37 to 66</p>
|
|
<p>Women, who discontinued OCS following surgery</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Not reported</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Framework approach</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
<p>Importance of ovarian cancer surveillance programs and knowledge of surgical options</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref14" rid="niceng241er1.s1.ref14">Lim 2004</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=47</p>
|
|
<p>Age, mean (SD), years: not reported; range: 24 to 76</p>
|
|
<p>Unaffected women with mutation results available</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Study sites across Australia</p>
|
|
<p><b>Data collection:</b> Structured interviews</p>
|
|
<p><b>Data analysis:</b> Interviews were analysed using thematic analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
<p>Importance of ovarian cancer surveillance programs and knowledge of surgical options</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref15" rid="niceng241er1.s1.ref15">Mireskandari 2006</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=15 partners of women</p>
|
|
<p>Age, mean (SD), years: 41.4 (SD not reported); range: 30 to 56</p>
|
|
<p>Women assessed as being at high risk of developing breast/ ovarian cancer</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Not reported</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> A multi-phase approach of Miles and Huberman</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Need for support networks and support groups</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref16" rid="niceng241er1.s1.ref16">Ormondroyd 2012</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=25</p>
|
|
<p>Age, mean (SD), years: not reported; ranges were:</p>
|
|
<p>18-25: N=0</p>
|
|
<p>26-30: N=8</p>
|
|
<p>31-35: N=6</p>
|
|
<p>36-40: N=6</p>
|
|
<p>41-45: N=5</p>
|
|
<p>Women and men who tested positive for a pathogenic <i>BRCA1</i> or <i>BRCA2</i> mutation</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> A hospital</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Inductive theoretical framework</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref17" rid="niceng241er1.s1.ref17">Pedrazzani 2022</a>
|
|
</p>
|
|
<p>Switzerland</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=48</p>
|
|
<p>Age, mean (SD), years: 51.8 (10.9)</p>
|
|
<p>Women who were confirmed carriers of pathogenic variants</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Not reported</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews and focus groups</p>
|
|
<p><b>Data analysis:</b> Inductive approach guided by constant comparison</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Tailor the delivery of information to suit the individual and their need and preferences</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref18" rid="niceng241er1.s1.ref18">Ratnayake 2011</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=39</p>
|
|
<p>Age, mean (SD), years: 58 (12.11)</p>
|
|
<p>Individuals from families with identified <i>BRCA1</i> or <i>BRCA2</i> mutations</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> The Kathleen Cunningham Foundation Consortium for Research into Familial Aspects of Breast Cancer (kConFab) which is a research co-operative</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Conceptual framework of Miles and Huberman</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Tailor the delivery of information to suit the individual and their need and preferences</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref19" rid="niceng241er1.s1.ref19">Samson 2014</a>
|
|
</p>
|
|
<p>Canada</p>
|
|
<p>Note: Women undergoing screening for ovarian cancer due to an HBOC genetic mutation were excluded</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=6</p>
|
|
<p>Age, mean (SD), years: 38.5 (SD not reported); range: 31 to 44</p>
|
|
<p>Women who had undergone genetic testing for hereditary breast/ovarian cancer and who had received a positive test result indicating that they carried a deleterious mutation in <i>BRCA1</i> or <i>BRCA2</i></p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Specialised risk assessment clinic</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Grounded theory method</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Need for support networks and support groups</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref20" rid="niceng241er1.s1.ref20">Seenandan-Sookdeo 2016</a>
|
|
</p>
|
|
<p>Canada</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=15</p>
|
|
<p>Age, mean (SD), years: not reported; median: 44, range: 28 to 54</p>
|
|
<p>Women with a positive <i>BRCA1/2</i> result</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> A hereditary breast and ovarian cancer clinic</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Van Manen’s (1990) selective approach</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref21" rid="niceng241er1.s1.ref21">Shilling 2020</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=11</p>
|
|
<p>Age, mean (SD), years: not reported; range: 38 to 77</p>
|
|
<p>Women with a known <i>BRCA 1/2</i> gene mutation</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> BRCA support groups and family history clinics</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> The Framework Approach was applied to thematic analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>Need for support networks and support groups</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Tailor the delivery of information to suit the individual and their need and preferences</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref22" rid="niceng241er1.s1.ref22">Smits 2016</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=9</p>
|
|
<p>Age, mean (SD), years: not reported; range: 44 to 77</p>
|
|
<p>Women at increased risk of ovarian cancer who had previously taken part in ovarian cancer screening</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Participants’ homes</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Interpretative phenomenological analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Tailor the delivery of information to suit the individual and their need and preferences</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref23" rid="niceng241er1.s1.ref23">Wakefield 2011</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=39</p>
|
|
<p>Age, mean (SD), years: 58 (12.11)</p>
|
|
<p>Relatives of high-risk mutation carriers</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Research co-operative</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Conceptual framework of Miles and Huberman was used to guide analysis, and emergent themes analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
<p>Reasons for and against genetic testing</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref24" rid="niceng241er1.s1.ref24">Wright 2018</a>
|
|
</p>
|
|
<p>United Kingdom</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=26</p>
|
|
<p>Ovarian cancer patients:</p>
|
|
<p>Age, mean (SD), years: 64 (SD not reported); range: 48 to 82</p>
|
|
<p>Breast cancer patients:</p>
|
|
<p>Age, mean (SD), years: 48 (SD not reported); range: 33 to 62</p>
|
|
<p>Women with breast or ovarian cancer who had undergone genetic testing</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Hospital</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> Thematic analysis</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The impact of the family on decisions about genetic testing</p>
|
|
<p>Reasons for and against genetic testing</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng241er1.s1.ref25" rid="niceng241er1.s1.ref25">Young 2019</a>
|
|
</p>
|
|
<p>Australia</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N= 21 families (n=67 young adults and their relatives)</p>
|
|
<p>Age, mean (SD), years: 44.87 (17.47)</p>
|
|
<p>Young adults and their relatives, with at least one member of the family having a <i>BRCA1/2</i> pathogenic variant</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p><b>Setting:</b> Metropolitan and regional genetic clinics that provide genetic testing services</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p>
|
|
<p><b>Data analysis:</b> In-depth thematic analysis using a Family Systems Theory approach</p>
|
|
</td><td headers="hd_h_niceng241er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Deficiency in the information and support provided</p>
|
|
<p>The role of the professional in providing information and support</p>
|
|
<p>Family as a source of information and support</p>
|
|
<p>Impact of genetic risk information on emotions and decision making</p>
|
|
</td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">CGC: cancer genetic counselling; OCS: ovarian cancer surveillance.</p></div></dd></dl><dl class="bkr_refwrap"><dt>*</dt><dd><div id="niceng241er1.tab2_1"><p class="no_margin">It is likely that participants are the same in both studies</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng241er1fig1"><div id="niceng241er1.fig1" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%201.%20Qualitative%20theme%20structure.&p=BOOKS&id=604385_niceng241er1f1.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img data-src="/books/NBK604385/bin/niceng241er1f1.jpg" alt="Figure 1. Qualitative theme structure." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 1</span><span class="title">Qualitative theme structure</span></h3></div></article><article data-type="table-wrap" id="figobniceng241er1appitab1"><div id="niceng241er1.appi.tab1" class="table"><h3><span class="label">Table 13</span><span class="title">Excluded studies and reasons for their exclusion</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK604385/table/niceng241er1.appi.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng241er1.appi.tab1_lrgtbl__"><table><thead><tr><th id="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Exclusion reason</th></tr></thead><tbody><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Andersen, M Robyn, Bowen, Deborah, Yasui, Yutaka
|
|
et al. (2003) Awareness and concern about ovarian cancer among women at risk because of a family history of breast or ovarian cancer. American journal of obstetrics and gynecology
|
|
189(4suppl): 42–7 [<a href="https://pubmed.ncbi.nlm.nih.gov/14586320" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14586320</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Augestad, Mirjam Tonheim, Hoberg-Vetti, Hildegunn, Bjorvatn, Cathrine
|
|
et al. (2017) Identifying Needs: a Qualitative Study of women’s Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study. Journal of genetic counseling
|
|
26(1): 182–189
|
|
[<a href="/pmc/articles/PMC5258794/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5258794</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27465808" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27465808</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant but population focussed on breast cancer. [4 diagnosed with ovarian cancer and 1 BRCA mutation carrier 29%, 13 diagnosed with breast cancer]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Babb, Sheri A, Swisher, Elizabeth M, Heller, Hope N
|
|
et al. (2002) Qualitative evaluation of medical information processing needs of 60 women choosing ovarian cancer surveillance or prophylactic oophorectomy. Journal of Genetic Counseling
|
|
11(2): 81–96
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/26141655" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26141655</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bakos, Alexis D, Hutson, Sadie P, Loud, Jennifer T
|
|
et al. (2008) BRCA mutation-negative women from hereditary breast and ovarian cancer families: a qualitative study of the BRCA-negative experience. Health expectations : an international journal of public participation in health care and health policy
|
|
11(3): 220–31
|
|
[<a href="/pmc/articles/PMC2803025/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2803025</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/18816319" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18816319</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Baty, Bonnie Jeanne; Kinney, Anita Yeomans; Ellis, Sara Marie (2003) Developing culturally sensitive cancer genetics communication aids for African Americans. American journal of medical genetics. Part A 118a(2): 146–55 [<a href="https://pubmed.ncbi.nlm.nih.gov/12655495" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12655495</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bernhardt, Barbara A, Geller, Gail, Strauss, Misha
|
|
et al. (1997) Toward a model informed consent process for BRCA1 testing: A qualitative assessment of women’s attitudes. Journal of Genetic Counseling
|
|
6(2): 207–222
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/11656642" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11656642</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Participants do not have familial ovarian cancer nor at increased risk of ovarian cancer</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bradbury, Angela R, Patrick-Miller, Linda, Pawlowski, Kimberly
|
|
et al. (2009) Learning of your parent’s BRCA mutation during adolescence or early adulthood: A study of offspring experiences. Psycho-Oncology
|
|
18(2): 200–208
|
|
[<a href="/pmc/articles/PMC4535792/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4535792</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/18702049" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18702049</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Brandner, S., Muller-Nordhorn, J., Stritter, W.
|
|
et al. (2014) Symptomization and triggering processes: Ovarian cancer patients’ narratives on pre-diagnostic sensation experiences and the initiation of healthcare seeking. Social Science and Medicine
|
|
119: 123–130
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/25179810" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25179810</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p><i>Themes focus on major concerns regarding their pre-diagnostic experiences and how their symptoms and circumstances eventually led them to seek medical care</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Buchanan, Adam H, Skinner, Celette Sugg, Rawl, Susan M
|
|
et al. (2005) Patients’ interest in discussing cancer risk and risk management with primary care physicians. Patient Education and Counseling
|
|
57(1): 77–87
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15797155" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15797155</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Campacci, Natalia, de Campos Reis Galvao, Henrique, Garcia, Lucas F
|
|
et al. (2020) Genetic cancer risk assessment: A screenshot of the psychosocial profile of women at risk for hereditary breast and ovarian cancer syndrome. Psycho-oncology
|
|
29(4): 681–687
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/31984583" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31984583</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>Study does not report qualitative data (no quotes, only overview of themes). Overview of families’ profiles and the challenges of the oncogenetics setting</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Chopra, Ishveen and Kelly, Kimberly M (2017) Cancer Risk Information Sharing: The Experience of Individuals Receiving Genetic Counseling for BRCA1/2 Mutations. Journal of health communication
|
|
22(2): 143–152
|
|
[<a href="/pmc/articles/PMC5586537/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5586537</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28112991" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28112991</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Claes, E., Evers-Kiebooms, G., Boogaerts, A.
|
|
et al. (2003) Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics
|
|
116(1): 11–19 [<a href="https://pubmed.ncbi.nlm.nih.gov/12476445" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12476445</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant but population focussed on breast cancer [11% had a personal history of ovarian cancer and 6% had a personal history of ovarian or breast cancer, whilst 83% had a family history of breast cancer]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Clarke, S.; Butler, K.; Esplen, M.J. (2008) The phases of disclosing BRCA1/2 genetic information to offspring. Psycho-Oncology
|
|
17(8): 797–803
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/18646247" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18646247</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p><i>Themes centre around the research trial not general practice. Population were participants of a group therapy trial</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Crook, Ashley, Plunkett, Loren, Forrest, Laura E
|
|
et al. (2015) Connecting patients, researchers and clinical genetics services: the experiences of participants in the Australian Ovarian Cancer Study (AOCS). European journal of human genetics : EJHG
|
|
23(2): 152–8
|
|
[<a href="/pmc/articles/PMC4297914/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4297914</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24824132" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24824132</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>Themes centre around the research trial not general practice</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Crotser, Cheryl B and Boehmke, Marcia (2009) Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: State of the science. Journal of Cancer Survivorship
|
|
3(1): 21–42
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19165605" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19165605</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Mixed methods review without any relevant qualitative data</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Crotser, Cheryl B and Dickerson, Suzanne S (2010) Women receiving news of a family BRCA1/2 mutation: Messages of fear and empowerment. Journal of Nursing Scholarship
|
|
42(4): 367–378
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/21091619" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21091619</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Cypowyj, C., Eisinger, F., Huiart, L.
|
|
et al. (2009) Subjective interpretation of inconclusive BRCA1/2 cancer genetic test results and transmission of information to the relatives. Psycho-Oncology
|
|
18(2): 209–215
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19061202" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19061202</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant but population focussed on breast cancer. [3 with a history of ovarian cancer 10%, 26 breast cancer, 1 other cancer]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dagan, Efrat and Goldblatt, Hadass (2009) The twilight zone between health and sickness: a qualitative exploration with asymptomatic BRCA1 and 2 mutation carriers. Women & health
|
|
49(4): 263–79
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19753503" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19753503</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dean, M. (2016) “It’s not if I get cancer, it’s when I get cancer”: BRCA-positive patients’ (un)certain health experiences regarding hereditary breast and ovarian cancer risk. Social Science and Medicine
|
|
163: 21–27
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/27376595" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27376595</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dean, Marleah and Davidson, Lindy G. (2018) Previvors’ Uncertainty Management Strategies for Hereditary Breast and Ovarian Cancer. Health Communication
|
|
33(2): 122–130
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/27976925" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27976925</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dean, Marleah and Rauscher, Emily A (2017) “It was an Emotional Baby”: Previvors’ Family Planning Decision-Making Styles about Hereditary Breast and Ovarian Cancer Risk. Journal of genetic counseling
|
|
26(6): 1301–1313
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/28138923" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28138923</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dean, Marleah, Scherr, Courtney L, Clements, Meredith
|
|
et al. (2017) “When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk. Patient education and counseling
|
|
100(9): 1738–1743
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/28385363" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28385363</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dekeuwer, Catherine and Bateman, Simone (2013) Much more than a gene: hereditary breast and ovarian cancer, reproductive choices and family life. Medicine, health care, and philosophy
|
|
16(2): 231–44
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/22048863" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22048863</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p><i>Themes are not entirely relevant. study explored the way in which BRCA1/2 carriers reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, arguments they used in favour or against taking that risk, and in the light of these arguments, their opinion on the acceptability of PGD as a reproductive option</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dibble, K.E., Donorfio, L.K.M., Britner, P.A.
|
|
et al. (2022) Perceptions and care Recommendations from Previvors: Qualitative analysis of female BRCA1/2 mutation Carriers’ experience with genetic testing and counseling. Gynecologic Oncology Reports
|
|
41: 100989
|
|
[<a href="/pmc/articles/PMC9079684/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC9079684</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/35540028" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 35540028</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Douglas, H.A.; Hamilton, R.J.; Grubs, R.E. (2009) The effect of BRCA gene testing on family relationships: A Thematic Analysis of Qualitative Interviews. Journal of Genetic Counseling
|
|
18(5): 418–435
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19479365" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19479365</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>A thesis of a secondary analysis of <a class="bibr" href="#niceng241er1.appi.ref37" rid="niceng241er1.appi.ref37">Hamilton 2005</a></i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dwyer, A.A., Hesse-Biber, S., Flynn, B.
|
|
et al. (2020) Parent of origin effects on family communication of risk in brca+ women: A qualitative investigation of human factors in cascade screening. Cancers
|
|
12(8): 1–16 [<a href="/pmc/articles/PMC7464326/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7464326</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32824510" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32824510</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Forbes Shepherd, Rowan, Forrest, Laura E, Tutty, Erin
|
|
et al. (2021) Unselected Women’s Experiences of Receiving Genetic Research Results for Hereditary Breast and Ovarian Cancer: A Qualitative Study. Genetic testing and molecular biomarkers
|
|
25(12): 741–748
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/34918982" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 34918982</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>Themes centre around experiences of the research study</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Forrest, K., Simpson, S.A., Wilson, B.J.
|
|
et al. (2003) To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics
|
|
64(4): 317–326
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/12974737" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12974737</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Population includes Huntington’s disease as well as breast cancer/Ovarian. Patients at risk for Huntington’s disease (n=16, 43%) as well as at risk for HBOC (n=21, 57%)</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gaba, F., Oxley, S., Liu, X.
|
|
et al. (2022) Unselected Population Genetic Testing for Personalised Ovarian Cancer Risk Prediction: A Qualitative Study Using Semi-Structured Interviews. Diagnostics (Basel)
|
|
12(5) [<a href="/pmc/articles/PMC9139231/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC9139231</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/35626184" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 35626184</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Women were recruited with no personal history of ovarian cancer or prior ovarian cancer susceptibility gene testing. It is unclear whether the women had a family history of ovarian cancer but no participant fulfilled the standard NHS clinical criteria for genetic testing. Only 2/9 included participants had first degree relatives with ovarian cancer Cand all participants received low-risk results. In addition, the study is nestled within a prospective cohort, pilot/feasibility study and some of the themes focus on experiences of the research trial</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gill, G., Beard, C., Storey, K.
|
|
et al. (2020) “It wasn’t just for me”: Motivations and implications of genetic testing for women at a low risk of hereditary breast and ovarian cancer syndrome. Psycho-Oncology
|
|
29(8): 1303–1311
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/32497346" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32497346</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant but population focussed on breast cancer. 14 first-degree relatives (FDRs) had breast cancer and three FDRs had ovarian cancer 16%]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Green, J; Murton, F; Statham, H (1993) Psychosocial issues raised by a familial ovarian cancer register. Journal of medical genetics
|
|
30(7): 575–9
|
|
[<a href="/pmc/articles/PMC1016457/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1016457</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/8411030" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 8411030</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>Narrative synthesis of qualitative methods. Does not contain relevant quotes</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Green, J, Richards, M, Murton, F
|
|
et al. (1997) Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer. Journal of genetic counseling
|
|
6(1): 45–60
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/26141962" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26141962</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>The population had a family history of either breast cancer or ovarian cancer and does not separate the two so unclear how many included in the study had a family history of ovarian cancer Also publication date is 1997</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hallowell, N., Alsop, K., Gleeson, M.
|
|
et al. (2013) The responses of research participants and their next of kin to receiving feedback of genetic test results following participation in the Australian Ovarian Cancer Study. Genetics in Medicine
|
|
15(6): 458–465
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/23448721" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23448721</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>Themes centre around experiences of the research study</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hallowell, N., Foster, C., Eeles, R.
|
|
et al. (2004) Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science and Medicine
|
|
59(3): 553–565
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15144764" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15144764</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Unclear how much of the population is at risk of ovarian cancer. [2 had been treated for ovarian cancer, 26 had at least one first-degree relative affected with either breast/ovarian/endometrial/prostate cancer, in addition to other relatives with these or other cancers]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hallowell, N., Murton, F., Statham, H.
|
|
et al. (1997) Women’s need for information before attending genetic counselling for familial breast or ovarian cancer: A questionnaire, interview, and observational study. British Medical Journal
|
|
314(7076): 281–283
|
|
[<a href="/pmc/articles/PMC2125728/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2125728</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/9022494" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 9022494</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Quantitative study</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hallowell, N, Foster, C, Eeles, R
|
|
et al. (2003) Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of medical ethics
|
|
29(2): 74–3
|
|
[<a href="/pmc/articles/PMC1733689/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1733689</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/12672886" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12672886</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant but population focussed on breast cancer. [27 had been previously treated for breast cancer, 2 for ovarian cancer 7%]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<a id="niceng241er1.appi.ref37"></a>Hamilton, Rebekah J; Bowers, Barbara J; Williams, Janet K (2005) Disclosing genetic test results to family members. Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing
|
|
37(1): 18–24
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15813582" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15813582</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Population includes people tested for Huntington’s disease, or hereditary breast and ovarian cancer. 14 of the 29 (48%) participants had positive HBOC results. Most participants were from the USA but also includes those from Canada and Denmark. Study looks at the experiences of people disclosing genetic results to biological family members. Think we could exclude it based on the population and country</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hamilton, Rebekah and Hurley, Karen E (2010) Conditions and consequences of a BRCA mutation in young, single women of childbearing age. Oncology nursing forum
|
|
37(5): 627–34
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/20797954" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20797954</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p><i>Themes as not relevant. The study examined young women’s understanding of HBOC risk and how being single affected the meaning of that risk. USA and Canadian study</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hamilton, Rebekah, Williams, Janet K, Skirton, Heather
|
|
et al. (2009) Living with genetic test results for hereditary breast and ovarian cancer. Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing
|
|
41(3): 276–83
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19723276" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19723276</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Study is follow-up of the previous <a class="bibr" href="#niceng241er1.appi.ref40" rid="niceng241er1.appi.ref40">Hamilton 2003</a> study of participants (n=7) who agreed to be interviewed at time point 2 and 3</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<a id="niceng241er1.appi.ref40"></a>Hamilton, RJ (2003) Experiencing predictive genetic testing in families with Huntington’s disease and hereditary breast and ovarian cancer. Experiencing Predictive Genetic Testing in Families With Huntington’s Disease & Hereditary Breast & Ovarian Cancer: 213p–213p
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Study is a dissertation. Most of participants (n=13) reside in the USA. n=4 from Canada and n=1 from Denmark</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hendricks-Sturrup, R.M.; Joseph, L.; Lu, C.Y. (2021) Patient-reported outcomes following genetic testing for familial hypercholesterolemia, breast and ovarian cancer syndrome, and lynch syndrome: A systematic review. Journal of Personalized Medicine
|
|
11(9): 850
|
|
[<a href="/pmc/articles/PMC8467628/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8467628</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/34575627" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 34575627</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>Systematic review of qualitative and mixed methods studies. No relevant qualitative data for inclusion but included studies list was checked for relevant papers</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hofferbert, S., Worringen, U., Backe, J.
|
|
et al. (2000) Simultaneous interdisciplinary counseling in German breast/ovarian cancer families: First experiences with patient perceptions, surveillance behavior and acceptance of genetic testing. Genetic Counseling
|
|
11(2): 127–146
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/10893664" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10893664</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Quantitative analysis</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hoskins, Lindsey M, Roy, Kevin, Peters, June A
|
|
et al. (2008) Disclosure of Positive BRCA1/2-Mutation Status in Young Couples: The Journey From Uncertainty to Bonding Through Partner Support. Families, systems & health : the journal of collaborative family healthcare
|
|
26(3): 296–316 [<a href="/pmc/articles/PMC4131236/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4131236</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25132793" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25132793</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hurley, K., Rubin, L.R., Werner-Lin, A.
|
|
et al. (2012) Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: A qualitative study of patient preferences. Cancer
|
|
118(24): 6270–6277
|
|
[<a href="/pmc/articles/PMC4910088/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4910088</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22736296" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22736296</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hurtado-de-Mendoza, Alejandra, Gomez-Trillos, Sara, Graves, Kristi D
|
|
et al. (2021) Process evaluation of a culturally targeted video for Latinas at risk of hereditary breast and ovarian cancer. Journal of genetic counseling
|
|
30(3): 730–741
|
|
[<a href="/pmc/articles/PMC10226534/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC10226534</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/33222313" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33222313</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Jennings, C., Wynn, J., Miguel, C.
|
|
et al. (2022) Mother and daughter perspectives on genetic counseling and testing of adolescents for hereditary breast cancer risk. Journal of Pediatrics [<a href="https://pubmed.ncbi.nlm.nih.gov/35777474" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 35777474</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Population includes mother/daughter combination, with the daughters at adolescent age <18years. Study also partly conducted in USA and has a focus on breast cancer risk</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Jones, T., Howard, H., Freeman-Costin, K.
|
|
et al. (2021) Knowledge and perceptions of BRCA1/2 genetic testing and needs of diverse women with a personal or family history of breast cancer in South Florida. Journal of Community Genetics
|
|
12(3): 415–429
|
|
[<a href="/pmc/articles/PMC8241944/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8241944</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/33555545" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33555545</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kajula, Outi; Kuismin, Outi; Kyngas, Helvi (2018) Identification as a Mutation Carrier and Effects on Life According to Experiences of Finnish Male BRCA1/2 Mutation Carriers. Journal of genetic counseling
|
|
27(4): 874–884
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/29332197" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29332197</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p><i>Themes are not focussed on information and support needs though there is evidence around the effects of knowledge of BRCA mutations. Studies looks at the experiences of men identified as BRCA mutation carriers. Could also exclude as population is men who are the BRCA carriers when the population is family/carers of people at increased risk</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kamara, Daniella, Weil, Jon, Youngblom, Janey
|
|
et al. (2018) Cancer Counseling of Low-Income Limited English Proficient Latina Women Using Medical Interpreters: Implications for Shared Decision-Making. Journal of genetic counseling
|
|
27(1): 155–168
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/28791541" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28791541</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kenen, R.; Ardern-Jones, A.; Eeles, R. (2004) We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-Oncology
|
|
13(5): 335–345
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15133774" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15133774</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Unclear how at risk the population is for ovarian cancer. [21 adults who have not had breast/ovarian cancer but have two or more cases of breast/ovarian cancer in the family]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kenen, R; Arden-Jones, A; Eeles, R (2004) Healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives. European journal of cancer care
|
|
13(2): 169–79
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15115473" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15115473</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Unclear how at risk the population is for ovarian cancer. [21 adults who have not had breast/ovarian cancer but have two or more cases of breast/ovarian cancer in the family] Publication date 2004</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kenen, R; Ardern-Jones, A; Eeles, R (2003) Living with chronic risk: healthy women with a family history of breast/ovarian cancer. Health, Risk & Society
|
|
5(3): 315–331
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Unclear how at risk the population is for ovarian cancer. [21 adults who have not had breast/ovarian cancer but have two or more cases of breast/ovarian cancer in the family] Publication date 2003</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kenen, Regina; Ardern-Jones, Audrey; Eeles, Rosalind (2003) Family stories and the use of heuristics: women from suspected hereditary breast and ovarian cancer (HBOC) families. Sociology of health & illness
|
|
25(7): 838–65
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19774749" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19774749</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Unclear how at risk the population is for ovarian cancer. [21 adults who have not had breast/ovarian cancer but have two or more cases of breast/ovarian cancer in the family] Publication date 2003</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kinney, Anita Yeomans, Gammon, Amanda, Coxworth, James
|
|
et al. (2010) Exploring attitudes, beliefs, and communication preferences of Latino community members regarding BRCA1/2 mutation testing and preventive strategies. Genetics in medicine : official journal of the American College of Medical Genetics
|
|
12(2): 105–15
|
|
[<a href="/pmc/articles/PMC3022322/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3022322</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20061960" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20061960</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Only 20% of the population had a family history of breast or ovarian cancer. Study explores attitudes about BRC1/2 testing but it’s appears as though only a small number of participants have an ovarian cancer risk. Study is also from the USA so could be excluded based on country</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Klitzman, R. and Chung, W. (2010) The process of deciding about prophylactic surgery for breast and ovarian cancer: Patient questions, uncertainties, and communication. American Journal of Medical Genetics, Part A 152a(1): 52–66 [<a href="/pmc/articles/PMC3152786/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3152786</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20014126" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20014126</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kne, Alyssa, Zierhut, Heather, Baldinger, Shari
|
|
et al. (2017) Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter. Journal of genetic counseling
|
|
26(4): 697–715
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/27826805" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27826805</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Li, S.-T., Sun, S., Lie, D.
|
|
et al. (2018) Factors influencing the decision to share cancer genetic results among family members: An in-depth interview study of women in an Asian setting. Psycho-Oncology
|
|
27(3): 998–1004
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/29314485" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29314485</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Lifford, K.J., Clements, A., Fraser, L.
|
|
et al. (2013) A qualitative study of women’s experiences of familial ovarian cancer screening. Psycho-Oncology
|
|
22(11): 2576–2584
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/23801640" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23801640</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Relevant qualitative themes not reported</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
MacDonald, D.J., Sarna, L., Weitzel, J.N.
|
|
et al. (2009) Women’s Perceptions of the Personal and Family Impact of Genetic Cancer Risk Assessment: Focus Group Findings. Journal of Genetic Counseling: 1–13 [<a href="https://pubmed.ncbi.nlm.nih.gov/19902342" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19902342</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Machirori, Mavis; Patch, Christine; Metcalfe, Alison (2019) Black and Minority Ethnic women’s decision-making for risk reduction strategies after BRCA testing: Use of context and knowledge. European journal of medical genetics
|
|
62(5): 376–384
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/30550831" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30550831</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Unclear what proportion of participants are at risk for ovarian cancer. participants had a family and personal history of various cancers including breast, ovarian, lung and prostate cancers. (n=6, 60% had positive BRCA mutations, only 1 participant had a family history of ovarian cancer)</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mallen, A.R., Conley, C.C., Fuzzell, L.
|
|
et al. (2021) “I think that a brief conversation from their provider can go a very long way”: Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer. Supportive Care in Cancer
|
|
29(5): 2663–2677
|
|
[<a href="/pmc/articles/PMC7981241/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7981241</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32975643" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32975643</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Matsukawa, Manami, Torishima, Masako, Satoh, Chika
|
|
et al. (2022) Japanese women’s reasons for accompaniment status to hereditary breast and ovarian cancer-focused genetic counseling. Journal of genetic counseling
|
|
31(2): 497–509
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/34661949" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 34661949</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mellon, S., Berry-Bobovski, L., Gold, R.
|
|
et al. (2006) Communication and decision-making about seeking inherited cancer risk information: Findings from female survivor-relative focus groups. Psycho-Oncology
|
|
15(3): 193–208
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/16100704" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16100704</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mellon, S., Berry-Bobovski, L., Gold, R.
|
|
et al. (2007) Concerns and recommendations regarding inherited cancer risk: The perspectives of survivors and female relatives. Journal of Cancer Education
|
|
22(3): 168–173
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/17760523" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17760523</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mellon, S, Gauthier, J, Cichon, M
|
|
et al. (2013) Knowledge, attitudes, and beliefs of Arab-American women regarding inherited cancer risk. Journal of genetic counseling
|
|
22(2): 268–76
|
|
[<a href="/pmc/articles/PMC3799781/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3799781</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23054337" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23054337</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mendes, A., Chiquelho, R., Santos, T.A.
|
|
et al. (2010) Family matters: Examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling. Journal of Community Genetics
|
|
1(4): 161–168
|
|
[<a href="/pmc/articles/PMC3186004/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3186004</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/22460298" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22460298</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>The study qualitatively assesses a multi-family group intervention for women who tested positive for BRCA mutations and their families</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Metcalfe, A., Werett, J., Burgess, L.
|
|
et al. (2007) Psychosocial impact of the lack of information given at referral about familial risk of cancer. Psycho-Oncology
|
|
16(5): 458–465
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/16933207" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16933207</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>The relevant quotes were not from people at risk for ovarian cancer</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Metcalfe, A., Werrett, J., Burgess, L.
|
|
et al. (2009) Cancer genetic predisposition: Information needs of patients irrespective of risk level. Familial Cancer
|
|
8(4): 403–412
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19517270" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19517270</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>A mixed methods study with a narrative synthesis for results. No qualitative themes or quotes</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Miller, F.A., Carroll, J.C., Wilson, B.J.
|
|
et al. (2010) The primary care physician role in cancer genetics: A qualitative study of patient experience. Family Practice
|
|
27(5): 563–569
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/20534792" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20534792</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Unclear how much of the population is at risk of ovarian cancer. Patients referred for genetic testing. Most (21/25) were referred for BRCA1/2 testing, 4 referred for hereditary nonpolyposis colorectal cancer testing</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Myklebust, Marion; Gjengedal, Eva; Stromsvik, Nina (2016) Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study. Journal of genetic counseling
|
|
25(6): 1198–1206
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/27091466" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27091466</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>Themes very relevant but centre around experiences of the research study</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Norris, Joan, Spelic, Stephanie Stockard, Snyder, Carrie
|
|
et al. (2009) Five families living with hereditary breast and ovarian cancer risk. Clinical journal of oncology nursing
|
|
13(1): 73–80
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19193551" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19193551</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Ormondroyd, E, Moynihan, C, Ardern-Jones, A
|
|
et al. (2008) Communicating genetics research results to families: problems arising when the patient participant is deceased. Psycho-oncology
|
|
17(8): 804–11
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/18688787" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18688787</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Does not include participants specifically with familial ovarian cancer or who are at increased risk of ovarian cancer. Study explored the process of post-mortem dissemination within families of the research finding of BRCA2 mutations in men with prostate cancer</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Patenaude, Andrea, DeMarco, Tiffani, Peshkin, Beth
|
|
et al. (2013) Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice. Journal of Genetic Counseling
|
|
22(3): 303–314
|
|
[<a href="/pmc/articles/PMC3646977/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3646977</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23093334" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23093334</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Perry, CE (2005) Managing susceptibility to hereditary breast and ovarian cancer. Managing Susceptibility to Hereditary Breast & Ovarian Cancer: 256p–256p
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>publication type is a dissertation. Also from the USA</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Phelps, C, Wood, F, Bennett, P
|
|
et al. (2007) Knowledge and expectations of women undergoing cancer genetic risk assessment: a qualitative analysis of free-text questionnaire comments. Journal of genetic counseling
|
|
16(4): 505–14
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/17318449" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17318449</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Relevant qualitative themes not reported</p>
|
|
<p>
|
|
<i>Themes centre around experiences of the research study</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Pozzar, Rachel A, Hong, Fangxin, Xiong, Niya
|
|
et al. (2022) Knowledge and psychosocial impact of genetic counseling and multigene panel testing among individuals with ovarian cancer. Familial cancer
|
|
21(1): 35–47
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/33751319" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33751319</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Puski, Athena, Hovick, Shelly, Senter, Leigha
|
|
et al. (2018) Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers. Journal of genetic counseling
|
|
27(5): 1291–1301
|
|
[<a href="/pmc/articles/PMC6612901/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6612901</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29594659" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29594659</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Quinn, Gwendolyn P; McIntyre, Jessica; Vadaparampil, Susan T (2011) Preferences for hereditary breast and ovarian cancer information among Mexican, Cuban and Puerto Rican women at risk. Public health genomics
|
|
14(45): 248–58
|
|
[<a href="/pmc/articles/PMC3136388/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3136388</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/20150724" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20150724</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Quinn, Gwendolyn P, Pal, Tuya, Murphy, Devin
|
|
et al. (2012) High-risk consumers’ perceptions of preimplantation genetic diagnosis for hereditary cancers: a systematic review and meta-analysis. Genetics in medicine : official journal of the American College of Medical Genetics
|
|
14(2): 191–200
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/22261755" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22261755</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Systematic review to assess high-risk consumers’ knowledge and perceptions of Preimplantation Genetic Testingfor hereditary cancers. Includes both quantitative and qualitative studies. No relevant qualitative data</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Rauscher, Emily A; Dean, Marleah; Campbell-Salome, Gemme M (2018) “I Am Uncertain About What My Uncertainty Even Is”: Men’s Uncertainty and Information Management of Their BRCA-Related Cancer Risks. Journal of genetic counseling
|
|
27(6): 1417–1427
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/29971606" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29971606</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Sa’at, Hamizah, Lee, Yew-Kong, Yoon, Sook-Yee
|
|
et al. (2022) Decision-making for Risk-reducing Salpingo-oophorectomy (RRSO) in Southeast Asian BRCA Mutation Carriers With Breast Cancer: A Qualitative Study. International Journal of Behavioral Medicine
|
|
29(1): 1–13
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/33791992" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 33791992</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Sermijn, E, Goelen, G, Teugels, E
|
|
et al. (2004) The impact of proband mediated information dissemination in families with a BRCA1/2 gene mutation. Journal of medical genetics
|
|
41(3): e23
|
|
[<a href="/pmc/articles/PMC1735692/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1735692</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/14985394" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14985394</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>No qualitative data. Quantitative study</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Shaw, J., Bulsara, C., Cohen, P.A.
|
|
et al. (2018) Investigating barriers to genetic counseling and germline mutation testing in women with suspected hereditary breast and ovarian cancer syndrome and Lynch syndrome. Patient Education and Counseling
|
|
101(5): 938–944
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/29273311" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29273311</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p><i>Themes relevant but population focussed on endometrial cancer. [3 with ovarian cancer 37%, 5 with endometrial cancer]. Unclear whether the participants had lynch syndrome</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Shkedi-Rafid, S., Gabai-Kapara, E., Grinshpun-Cohen, J.
|
|
et al. (2012) BRCA genetic testing of individuals from families with low prevalence of cancer: Experiences of carriers and implications for population screening. Genetics in Medicine
|
|
14(7): 688–694
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/22481128" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22481128</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Sussner, Katarina M, Edwards, Tiffany, Villagra, Cristina
|
|
et al. (2015) BRCA genetic counseling among at-risk Latinas in New York City: new beliefs shape new generation. Journal of genetic counseling
|
|
24(1): 134–48
|
|
[<a href="/pmc/articles/PMC4399761/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4399761</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25120034" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25120034</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Suttman, Alexandra, Pilarski, Robert, Agnese, Doreen M
|
|
et al. (2018) “Second-Class Status?” Insight into Communication Patterns and Common Concerns Among Men with Hereditary Breast and Ovarian Cancer Syndrome. Journal of genetic counseling
|
|
27(4): 885–893
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/29404823" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29404823</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Swisher, E M, Babb, S, Whelan, A
|
|
et al. (2001) Prophylactic oophorectomy and ovarian cancer surveillance. Patient perceptions and satisfaction. The Journal of reproductive medicine
|
|
46(2): 87–94
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/11255821" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11255821</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Tezak, Ann Louise, Weidner, Anne, Clouse, Kate
|
|
et al. (2021) Using an anthropological lens to explore motivators and challenges for follow-up care decision making among female BRCA1/2 carriers at risk for inherited cancer. Human Organization
|
|
80(3): 203–213
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Underhill, Meghan L and Crotser, Cheryl B (2014) Seeking balance: Decision support needs of women without cancer and a deleterious BRCA1 or BRCA2 mutation. Journal of Genetic Counseling
|
|
23(3): 350–362
|
|
[<a href="/pmc/articles/PMC4138835/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4138835</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24271037" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24271037</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Vogel, R.I., Niendorf, K., Lee, H.
|
|
et al. (2018) A qualitative study of barriers to genetic counseling and potential for mobile technology education among women with ovarian cancer. Hereditary Cancer in Clinical Practice
|
|
16(1): 13
|
|
[<a href="/pmc/articles/PMC6031189/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6031189</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29997716" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29997716</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Wakefield, Claire E, Kasparian, Nadine A, Meiser, Bettina
|
|
et al. (2007) Attitudes toward genetic testing for cancer risk after genetic counseling and decision support: a qualitative comparison between hereditary cancer types. Genetic testing
|
|
11(4): 401–11
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/18294057" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18294057</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Mixed population (22% at risk of hereditary nonpolyposis colorectal cancer and 78% at risk of breast/ovarian cancer), results not reported separately for target population</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Werner-Lin, Allison (2008) Formal and informal support needs of young women with BRCA mutations. Journal of psychosocial oncology
|
|
26(4): 111–33
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19042275" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19042275</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Werner-Lin, Allison V (2007) Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer. Family process
|
|
46(3): 335–49
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/17899857" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 17899857</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Wiseman, M.; Dancyger, C.; Michie, S. (2010) Communicating genetic risk information within families: A review. Familial Cancer
|
|
9(4): 691–703
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/20852947" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20852947</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not relevant to this review protocol</p>
|
|
<p><i>Narrative review of mixed methods studies</i>.</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Young, Alison L, Butow, Phyllis N, Vetsch, Janine
|
|
et al. (2017) Family communication, risk perception and cancer knowledge of young adults from BRCA1/2 families: A systematic review. Journal of Genetic Counseling
|
|
26(6): 1179–1196
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/28667568" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28667568</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Systematic review used as a source of primary studies</p>
|
|
<p>Included papers’ country of origin not relevant to this review protocol (paper not further checked for relevance)</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Zilliacus, Elvira M, Meiser, Bettina, Lobb, Elizabeth A
|
|
et al. (2010) Women’s experience of telehealth cancer genetic counseling. Journal of genetic counseling
|
|
19(5): 463–72
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/20411313" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20411313</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not relevant to this review protocol</p>
|
|
<p>
|
|
<i>Themes relevant. Population includes mostly those with breast cancer [only 1 participant with breast and ovarian cancer]</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Andersen, M Robyn, Bowen, Deborah, Yasui, Yutaka
|
|
et al. (2003) Awareness and concern about ovarian cancer among women at risk because of a family history of breast or ovarian cancer. American journal of obstetrics and gynecology
|
|
189(4suppl): 42–7 [<a href="https://pubmed.ncbi.nlm.nih.gov/14586320" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14586320</span></a>]
|
|
</td><td headers="hd_h_niceng241er1.appi.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Country not relevant to this review protocol (paper not further checked for relevance)</td></tr></tbody></table></div></div></article></div><div id="jr-scripts"><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/libs.min.js"> </script><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/jr.min.js"> </script></div></div>
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