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class="bkr_bib"><h1 id="_NBK574979_"><span itemprop="name">Understanding the risks and benefits of healthcare decisions</span></h1><div class="subtitle">Babies, children and young people’s experience of healthcare</div><p><b>Evidence review E</b></p><p><i>NICE Guideline, No. 204</i></p><p class="contrib-group"><h4>Authors</h4><span itemprop="author">National Guideline Alliance (UK)</span>.</p><div class="half_rhythm">London: <a href="https://www.nice.org.uk" 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">2021 Aug</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-4231-2</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2021.</div></div><div class="bkr_clear"></div></div><div id="niceng204er5.s1"><h2 id="_niceng204er5_s1_">Understanding the risks and benefits of healthcare decisions</h2><div id="niceng204er5.s1.1"><h3>Review question</h3><p>What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</p><div id="niceng204er5.s1.1.1"><h4>Introduction</h4><p>In order to be involved in decisions about their care, children and young people, and the parents and carers of babies and young children, need to be provided with information about the risks and benefits of different options so that they can weigh up the choices. Promoting an understanding of the potential effectiveness or side-effects of any intervention is an essential component of shared decision-making, and this in turn has the potential to make young people feel more involved and empowered, more in control and better prepared for treatment, improve motivation and engagement with treatment, and potentially reduce any conflict in decisions between parents, children or young people, and healthcare providers.</p><p>The quality of information provided has been shown to be a key facilitator in promoting shared decision-making in paediatric settings, although the ability to make decisions based on this information also depends on clarity with which this information is shared and an individual’s capacity to utilise this information.</p><p>Information about risks and benefits can be presented in a variety of formats. The most appropriate format for an individual child or young person will vary according to a number of factors including their age and cognitive development, their medical condition and the complexity of any interventions under consideration. Information also needs to be contextualised and personalised in order to make it most relevant to the individual.</p><p>The aim of this review is to determine the best way to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions.</p></div><div id="niceng204er5.s1.1.2"><h4>Summary of the protocol</h4><p>See <a class="figpopup" href="/books/NBK574979/table/niceng204er5.tab1/?report=objectonly" target="object" rid-figpopup="figniceng204er5tab1" rid-ob="figobniceng204er5tab1">Table 1</a> for a summary of the Population, Intervention, Comparison and Outcome (PICO) characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er5tab1"><a href="/books/NBK574979/table/niceng204er5.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er5tab1" rid-ob="figobniceng204er5tab1"><img class="small-thumb" src="/books/NBK574979/table/niceng204er5.tab1/?report=thumb" src-large="/books/NBK574979/table/niceng204er5.tab1/?report=previmg" alt="Table 1. Summary of the protocol (PICO table)." /></a><div class="icnblk_cntnt"><h4 id="niceng204er5.tab1"><a href="/books/NBK574979/table/niceng204er5.tab1/?report=objectonly" target="object" rid-ob="figobniceng204er5tab1">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="#niceng204er5.appa">appendix A</a>.</p></div><div id="niceng204er5.s1.1.3"><h4>Methods and process</h4><p>This evidence review was developed using the methods and process described in <u>Developing NICE guidelines: the manual</u>. Methods for this review question are described in the review protocol in <a href="#niceng204er5.appa">appendix A</a> and the <a href="/books/NBK574979/bin/niceng204er5_bm2.pdf">methods</a> supplement.</p></div><div id="niceng204er5.s1.1.4"><h4>Clinical evidence</h4><div id="niceng204er5.s1.1.4.1"><h5>Included studies</h5><p>This was a quantitative review with the aim of:
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<ul><li class="half_rhythm"><div>Establishing how the risks and benefits of healthcare-relevant decisions (e.g. about treatment alternatives) should be communicated to children and young people and the parents/carers of babies and young children in order to support informed decision making.</div></li></ul></p><p>A systematic review of the literature was conducted. Five studies were included for this review, 4 randomised controlled trials (RCTs) and 1 systematic review (<a class="bibr" href="#niceng204er5.s1.1.ref1" rid="niceng204er5.s1.1.ref1">Hulin 2017</a>, <a class="bibr" href="#niceng204er5.s1.1.ref2" rid="niceng204er5.s1.1.ref2">Parker 2017</a>, <a class="bibr" href="#niceng204er5.s1.1.ref3" rid="niceng204er5.s1.1.ref3">Robbins 2003</a> and <a class="bibr" href="#niceng204er5.s1.1.ref4" rid="niceng204er5.s1.1.ref4">Rowe 2018</a>, <a class="bibr" href="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a>).</p><p>The RCTs included the following comparisons:
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<ul><li class="half_rhythm"><div>Comparison 1: a decision aid plus conventional clinical counselling versus conventional clinical counselling alone, in decisions regarding dental anaesthesia (<a class="bibr" href="#niceng204er5.s1.1.ref1" rid="niceng204er5.s1.1.ref1">Hulin 2017</a>)</div></li><li class="half_rhythm"><div>Comparison 2: a decision aid plus standard information versus standard information alone, in adolescents contemplating orthodontic fixed appliances (<a class="bibr" href="#niceng204er5.s1.1.ref2" rid="niceng204er5.s1.1.ref2">Parker 2017</a>)</div></li><li class="half_rhythm"><div>Comparison 3: an information booklet for new parents plus a home visit versus standard care, for minor illnesses in infants (<a class="bibr" href="#niceng204er5.s1.1.ref3" rid="niceng204er5.s1.1.ref3">Robbins 2003</a>)</div></li><li class="half_rhythm"><div>Comparison 4: a novel self-help decisional tool (My Self-Help Tool) versus the Childline webpage, in adolescents who had recently self-harmed (<a class="bibr" href="#niceng204er5.s1.1.ref4" rid="niceng204er5.s1.1.ref4">Rowe 2018</a>)</div></li><li class="half_rhythm"><div>Comparison 5: this systematic review included studies that investigated the effectiveness of any decision aid tool in paediatric healthcare compared to a variety of control conditions (<a class="bibr" href="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a>).</div></li></ul></p><p>The included studies are summarised in <a class="figpopup" href="/books/NBK574979/table/niceng204er5.tab2/?report=objectonly" target="object" rid-figpopup="figniceng204er5tab2" rid-ob="figobniceng204er5tab2">Table 2</a>.</p><p>See the literature search strategy in <a href="#niceng204er5.appb">appendix B</a> and study selection flow chart in <a href="#niceng204er5.appc">appendix C</a>.</p></div><div id="niceng204er5.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="#niceng204er5.appk">appendix K</a>.</p></div></div><div id="niceng204er5.s1.1.5"><h4>Summary of studies included in the evidence review</h4><p>Summaries of the studies that were included in this review are presented in <a class="figpopup" href="/books/NBK574979/table/niceng204er5.tab2/?report=objectonly" target="object" rid-figpopup="figniceng204er5tab2" rid-ob="figobniceng204er5tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er5tab2"><a href="/books/NBK574979/table/niceng204er5.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er5tab2" rid-ob="figobniceng204er5tab2"><img class="small-thumb" src="/books/NBK574979/table/niceng204er5.tab2/?report=thumb" src-large="/books/NBK574979/table/niceng204er5.tab2/?report=previmg" alt="Table 2. Summary of included studies." /></a><div class="icnblk_cntnt"><h4 id="niceng204er5.tab2"><a href="/books/NBK574979/table/niceng204er5.tab2/?report=objectonly" target="object" rid-ob="figobniceng204er5tab2">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="#niceng204er5.appd">appendix D</a> and the forest plots in <a href="#niceng204er5.appe">appendix E</a>.</p></div><div id="niceng204er5.s1.1.6"><h4>Summary of the evidence</h4><p>Evidence was found for 3 of the pre-defined outcomes listed in the protocol: satisfaction, knowledge and decisional conflict. No evidence was found for adverse effects or congruence of decision.</p><p>Three studies used interventions for children and young people themselves. One study compared the use of a written booklet plus conventional counselling with conventional counselling only when making a decision regarding dental anaesthesia (<a class="bibr" href="#niceng204er5.s1.1.ref1" rid="niceng204er5.s1.1.ref1">Hulin 2017</a>). At follow-up, knowledge of young people was significantly higher (better) in the intervention group compared to the control group. No difference between the groups was found for decisional conflict. A second study compared the use of a booklet decision aid plus standard information with standard verbal and written information alone when making decisions about fixed appliance in orthodontic treatment (<a class="bibr" href="#niceng204er5.s1.1.ref2" rid="niceng204er5.s1.1.ref2">Parker 2017</a>). No difference was found between groups for decisional conflict. The final study compared the use of an interactive My Self-Help Tool decisional aid with a static written information source (<a class="bibr" href="#niceng204er5.s1.1.ref4" rid="niceng204er5.s1.1.ref4">Rowe 2018</a>). No difference in decisional conflict was found between groups. The quality of evidence for all the above results was judged to be very low.</p><p>One study used an intervention designed for parents of babies, using a home visit plus an information booklet with standard care to inform parents of childhood illnesses and the healthcare options available to them (<a class="bibr" href="#niceng204er5.s1.1.ref3" rid="niceng204er5.s1.1.ref3">Robbins 2003</a>). No difference was found in measures of parental knowledge. Evidence for this study was judged to be very low to low quality.</p><p>The systematic review included studies that considered the use of a wide variety of decisional aids with a range of comparators. These decisional aids were designed for children and young people, parents and carers, or healthcare professionals (<a class="bibr" href="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a>). Knowledge was significantly higher (better) and decisional conflict was significantly lower (better) when using decisional aids. No difference was found between groups in degree of satisfaction. Evidence was judged to be very low quality and should be interpreted with caution due to concerns over the suitability of meta-analysing such a heterogeneous population, differences in each studies concept of shared decision-making, and the variety of study designs included, how the format of decisional aids might affect these measures or if certain healthcare areas were more suited to decisional aids.</p></div><div id="niceng204er5.s1.1.7"><h4>Quality assessment of studies included in the evidence review</h4><p>See the evidence profiles in <a href="#niceng204er5.appf">appendix F</a>.</p></div><div id="niceng204er5.s1.1.8"><h4>Evidence from reference groups and focus groups</h4><p>The children and young people’s reference groups and focus groups provided additional evidence for this review. A summary of the findings is presented in <a class="figpopup" href="/books/NBK574979/table/niceng204er5.tab3/?report=objectonly" target="object" rid-figpopup="figniceng204er5tab3" rid-ob="figobniceng204er5tab3">Table 3</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er5tab3"><a href="/books/NBK574979/table/niceng204er5.tab3/?report=objectonly" target="object" title="Table 3" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er5tab3" rid-ob="figobniceng204er5tab3"><img class="small-thumb" src="/books/NBK574979/table/niceng204er5.tab3/?report=thumb" src-large="/books/NBK574979/table/niceng204er5.tab3/?report=previmg" alt="Table 3. Summary of the evidence from reference and focus groups." /></a><div class="icnblk_cntnt"><h4 id="niceng204er5.tab3"><a href="/books/NBK574979/table/niceng204er5.tab3/?report=objectonly" target="object" rid-ob="figobniceng204er5tab3">Table 3</a></h4><p class="float-caption no_bottom_margin">Summary of the evidence from reference and focus groups. </p></div></div><p>See the full evidence summary in <a href="#niceng204er5.appm">appendix M</a>.</p></div><div id="niceng204er5.s1.1.9"><h4>Evidence from national surveys</h4><p>No evidence from the grey literature review of national surveys of children and young people’s experience was identified for this review so there is no evidence summary in <a href="#niceng204er5.appn">appendix N</a>.</p></div><div id="niceng204er5.s1.1.10"><h4>Economic evidence</h4><div id="niceng204er5.s1.1.10.1"><h5>Included studies</h5><p>A systematic review of the economic literature was conducted but no studies were identified which were applicable to this review question. A single economic search was undertaken for all topics included in the scope of this guideline. See <a href="/books/NBK574979/bin/niceng204er5_bm8.pdf">supplementary material 6</a> for details.</p></div><div id="niceng204er5.s1.1.10.2"><h5>Excluded studies</h5><p>Economic studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng204er5.appk">appendix K</a>.</p></div></div><div id="niceng204er5.s1.1.11"><h4>Summary of studies included in the economic evidence review</h4><p>No studies were identified which were applicable to this review question.</p></div><div id="niceng204er5.s1.1.12"><h4>Economic model</h4><p>This review question was identified as an economic priority, however, no economic modelling was undertaken because there was insufficient effectiveness data.</p></div><div id="niceng204er5.s1.1.13"><h4>The committee’s discussion of the evidence</h4><div id="niceng204er5.s1.1.13.1"><h5>Interpreting the evidence</h5><div id="niceng204er5.s1.1.13.1.1"><h5>The outcomes that matter most</h5><p>When discussing the outcomes that matter most, the committee were aware that an effective decision aid has to be both acceptable and educational for children and young people, or the parents or carers of babies and young children, to ensure it is used and assists in their decision-making, and therefore satisfaction and knowledge of risks and benefits were prioritised as critical outcomes by the committee.</p><p>The committee recognised that using a decision aid incorrectly or misunderstanding the information it provided could lead to adverse outcomes and so they selected this as an important outcome. The committee also recognised that decision aids may lead to children and young people making decisions that were different to those made by others involved in the decision-making process, and therefore chose congruence as an important outcome. Finally, the committee recognised that children and young people might find it difficult to make decisions and so selected decisional conflict as an important outcome.</p></div><div id="niceng204er5.s1.1.13.1.2"><h5>The quality of the evidence</h5><p>The quality of each study was appraised using the Cochrane Risk of Bias tool for randomised studies Version 2. The quality of the systematic review was appraised using the Cochrane ROBIS tool for Systematic Reviews.</p><p>The overall quality of evidence was assessed using GRADE methodology and was judged as being very low to low quality. The main reason for downgrading the evidence was due to concerns about the risk of bias of included studies and imprecision in the effect estimates.</p><p>The included systematic review (<a class="bibr" href="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a>) reported a meta-analysis of evidence on decision aids. The evidence was judged to be low quality due to concerns over risk of bias in the study design and indirectness in the population. As noted in the risk of bias assessment, the degree of heterogeneity of included studies was very high, and was due to a number of factors: the studies were conducted in a range of countries and various clinical settings, and most importantly the included decision aids varied widely from simple leaflets to intensive series of educational sessions. Additionally, the systematic review pooled a variety of study designs in the meta analysis (RCTs, non-randomised controlled trials and pre/post designs). Caution must therefore be taken when interpreting the results from the <a class="bibr" href="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a> systematic review, as the effects seen cannot be assigned to one particular type of decision aid.</p><p>No evidence was found for ‘adverse outcomes’ or ‘congruence’.</p></div><div id="niceng204er5.s1.1.13.1.3"><h5>Benefits and harms</h5><p>The committee discussed the fact that the included studies provided evidence for a limited number of specific methods of sharing risks and benefits information with children and young people and their parents or carers, but there was not enough evidence to recommend one specific method or decision aid over another. Because of this, the committee made a research recommendation about the relative effectiveness and acceptability of different decision aids.</p><p>However, taking the evidence as a whole, there was some evidence that use of decision aids increased knowledge of risks and benefits and may reduce decisional conflict. The committee noted that a general recommendation about using decision aids to help in shared decision-making had already been included in the guideline (based on qualitative evidence on shared decision-making). The evidence from this review therefore reinforced the validity of that recommendation.</p><p>Based on this evidence, and also on their knowledge and expertise, the committee made a recommendation that children and young people, and the parents or carers of babies and young children, should be offered information about the risks and benefits of healthcare options to allow them to make informed decisions, and agreed that this should be standard practice. The committee agreed that this information could be provided in a variety of formats. As they did not have evidence to recommend one format over another, they made recommendations relating to the principles that should be followed – for example that the information should be appropriate for the child or young person, in a format they could understand, and relevant to them. The committee also agreed that as well as providing the information, it was important that this information should be discussed, and questions answered, and what would be done to mitigate risk explained, and they made recommendations to this effect.</p><p>The data from the reference and focus groups provided more evidence that the committee used in addition to the evidence from the systematic literature review. The reference groups had considered a number of healthcare scenarios and there was a mix of views – some children and young people wanted to be informed of the risks, some were unsure and were worried that the risks would scare them, and others would not want to know the risks. Based on this evidence and their knowledge and experience, the committee made recommendations to ensure that personal preferences were taken into account, and that discussing risks and benefits might need to be phased and paced carefully so young people were not overwhelmed. The committee discussed whether children and young people could opt-out of being told about the risks completely, but agreed that for the purposes of obtaining informed consent it was the responsibility of the healthcare professional to inform them of the risks of any treatment options, and so the committee included this in the recommendations. The reference groups also mentioned in need for healthcare professionals to not only tell them about the risks, but also what is being done to mitigate those risks. However, the committee felt that this was already adequately covered in the recommendations they had made.</p><p>The committee agreed that, as with other discussions, children and young people might want to discuss risks and benefits without their parents or carers present and that this should be an option, and so they made a recommendation stating this.</p><p>The committee noted that the evidence from the reference groups was that it could help if measures to reduce risk could also be included in discussions about risk. The committee agreed that this reflected their experience too, and so made a recommendation relating to mitigation of risks.</p><p>There was no evidence for the outcomes of adverse events from use of decision aids, and the committee did not identify any specific harms from the evidence or from their recommendations. However, they realised it could be perceived as harmful to discuss the treatment risks with children and young people (and parents of babies and young children) as it might deter them from consenting to important treatment. However, they felt this was mitigated by their recommendations to recognise that some people may prefer not to know the risks, and that there should be opportunities to discuss concerns about risks, and what can be done to reduce risk.</p></div></div><div id="niceng204er5.s1.1.13.2"><h5>Cost effectiveness and resource use</h5><p>There was no existing economic evidence for this review. The committee discussed that ensuring that children and young people and the parents or carers of babies and young children are given information about the risks and benefits of healthcare options may take more time to have the necessary discussions or additional conversations, but that in many settings it was already standard practice. The committee noted that there may be differences in costs associated with various decision aids. For example, it may be more expensive to develop and provide interactive tools then compared with written information only. However, once a decision aid is developed it could potentially be used by thousands of children, young people and the parents or carers of babies and young children and any costs of such decision aids per user will be negligible. Moreover, the use of a particular decision aid is likely to be dictated by needs of a user and additional costs, if any, will be offset by benefits associated with shared decision making and people making informed choices about their healthcare, for example, improvements in their knowledge and a reduction in decisional conflict. All other recommendations reflect current practice and are not expected to result in additional resource use.</p></div></div><div id="niceng204er5.s1.1.14"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.1.4 to 1.1.7 and 1.3.5 to 1.3.10 and the research recommendation on decision aids.</p></div><div id="niceng204er5.s1.1.rl.r1"><h4>References</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er5.s1.1.ref1"><p id="p-200">
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<strong>Hulin 2017</strong>
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</p>Hulin, J., Baker, S. R., Marshman, Z., Albadri, S., Rodd, H. D., Development of a decision aid for children faced with the decision to undergo dental treatment with sedation or general anaesthesia, International Journal of Paediatric Dentistry, 27, 344–355, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/27684707" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27684707</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er5.s1.1.ref2"><p id="p-201">
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<strong>Parker 2017</strong>
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</p>Parker, K., Cunningham, S. J., Petrie, A., Ryan, F. S., Randomized controlled trial of a patient decision-making aid for orthodontics, American Journal of Orthodontics and Dentofacial Orthopedics : official publication of the American Association of Orthodontists, its constituent societies, and the American Board of Orthodontics, 152, 154–160, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/28760277" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28760277</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er5.s1.1.ref3"><p id="p-202">
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<strong>Robbins 2003</strong>
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</p>Robbins, H., Hundley, V., Osman, L. M., Minor illness education for parents of young children, Journal of Advanced Nursing, 44, 238–47, 2003 [<a href="https://pubmed.ncbi.nlm.nih.gov/14641393" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14641393</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er5.s1.1.ref4"><p id="p-203">
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<strong>Rowe 2018</strong>
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</p>Rowe, Sarah L., Patel, Krisna, French, Rebecca S., Henderson, Claire, Ougrin, Dennis, Slade, Mike, Moran, Paul, Web-Based Decision Aid to Assist Help-Seeking Choices for Young People Who Self-Harm: Outcomes From a Randomized Controlled Feasibility Trial, JMIR Mental Health, 5, e10, 2018 [<a href="/pmc/articles/PMC5811653/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5811653</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29382626" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29382626</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng204er5.s1.1.ref5"><p id="p-204">
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<strong>Wyatt 2015</strong>
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</p>Wyatt, K. D., List, B., Brinkman, W. B., Prutsky Lopez, G., Asi, N., Erwin, P., Wang, Z., Domecq Garces, J. P., Montori, V. M., LeBlanc, A., Shared Decision Making in Pediatrics: A Systematic Review and Meta-analysis, Academic Pediatrics, 15, 573–583, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/25983006" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25983006</span></a>]</div></p></li></ul></div></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng204er5.appa"><h3>Appendix A. Review protocol</h3><p id="niceng204er5.appa.et1"><a href="/books/NBK574979/bin/niceng204er5-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 408K)</span></p></div><div id="niceng204er5.appb"><h3>Appendix B. Literature search strategies</h3><p id="niceng204er5.appb.et1"><a href="/books/NBK574979/bin/niceng204er5-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Literature search strategies for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 267K)</span></p></div><div id="niceng204er5.appc"><h3>Appendix C. Clinical evidence study selection</h3><p id="niceng204er5.appc.et1"><a href="/books/NBK574979/bin/niceng204er5-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 212K)</span></p></div><div id="niceng204er5.appd"><h3>Appendix D. Clinical evidence tables</h3><p id="niceng204er5.appd.et1"><a href="/books/NBK574979/bin/niceng204er5-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Evidence tables for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 459K)</span></p></div><div id="niceng204er5.appe"><h3>Appendix E. Forest plots</h3><p id="niceng204er5.appe.et1"><a href="/books/NBK574979/bin/niceng204er5-appe-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Forest plots for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 540K)</span></p></div><div id="niceng204er5.appf"><h3>Appendix F. GRADE tables</h3><p id="niceng204er5.appf.et1"><a href="/books/NBK574979/bin/niceng204er5-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">GRADE tables for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 329K)</span></p></div><div id="niceng204er5.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng204er5.appg.s1"><h4>Economic evidence study selection for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><p>No economic evidence was identified which was applicable to this review question.</p></div></div><div id="niceng204er5.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng204er5.apph.s1"><h4>Economic evidence tables for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng204er5.appi"><h3>Appendix I. Economic evidence profiles</h3><div id="niceng204er5.appi.s1"><h4>Economic evidence profiles for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><p>No economic evidence was identified which was applicable to this review question.</p></div></div><div id="niceng204er5.appj"><h3>Appendix J. Economic analysis</h3><div id="niceng204er5.appj.s1"><h4>Economic evidence analysis for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng204er5.appk"><h3>Appendix K. Excluded studies</h3><div id="niceng204er5.appk.s1"><h4>Excluded studies for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><div id="niceng204er5.appk.s2"><h5>Clinical studies</h5><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng204er5appktab1"><a href="/books/NBK574979/table/niceng204er5.appk.tab1/?report=objectonly" target="object" title="Table 11" class="img_link icnblk_img figpopup" rid-figpopup="figniceng204er5appktab1" rid-ob="figobniceng204er5appktab1"><img class="small-thumb" src="/books/NBK574979/table/niceng204er5.appk.tab1/?report=thumb" src-large="/books/NBK574979/table/niceng204er5.appk.tab1/?report=previmg" alt="Table 11. Excluded studies and reasons for their exclusion." /></a><div class="icnblk_cntnt"><h4 id="niceng204er5.appk.tab1"><a href="/books/NBK574979/table/niceng204er5.appk.tab1/?report=objectonly" target="object" rid-ob="figobniceng204er5appktab1">Table 11</a></h4><p class="float-caption no_bottom_margin">Excluded studies and reasons for their exclusion. </p></div></div></div><div id="niceng204er5.appk.s3"><h5>Economic studies</h5><p>No economic evidence was identified for this review. See <a href="/books/NBK574979/bin/niceng204er5_bm8.pdf">supplementary material 6</a> for details.</p></div></div></div><div id="niceng204er5.appl"><h3>Appendix L. Research recommendations</h3><p id="niceng204er5.appl.et1"><a href="/books/NBK574979/bin/niceng204er5-appl-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Research recommendations for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 309K)</span></p></div><div id="niceng204er5.appm"><h3>Appendix M. Evidence from reference groups and focus groups</h3><p id="niceng204er5.appm.et1"><a href="/books/NBK574979/bin/niceng204er5-appm-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Reference and focus group evidence for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</a><span class="small"> (PDF, 268K)</span></p></div><div id="niceng204er5.appn"><h3>Appendix N. Evidence from national surveys</h3><div id="niceng204er5.appn.s1"><h4>Evidence from national surveys for review question: What are the best ways to help children and young people and the parents and carers of babies and young children understand the risks and benefits of healthcare decisions?</h4><p>Methods for the grey literature review of national surveys and details of the surveys included are described in <a href="/books/NBK574979/bin/niceng204er5_bm6.pdf">Supplement 5</a>.</p><p>No evidence from the grey literature review of national surveys of children and young people’s experience was identified for this review question.</p></div></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews underpinning recommendations 1.1.4 to 1.1.7 and 1.3.5 to 1.3.10 and research recommendations in the NICE guideline</p><p>These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists</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="http://wales.gov.uk/" 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 2021.</div><div class="small"><span class="label">Bookshelf ID: NBK574979</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/34730916" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">34730916</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng204er5tab1"><div id="niceng204er5.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/NBK574979/table/niceng204er5.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er5.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng204er5.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Population</th><td headers="hd_b_niceng204er5.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">
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<ul><li class="half_rhythm"><div>People <18 years old who have experience of healthcare</div></li><li class="half_rhythm"><div>Studies that use the views of parents or carers as proxies will be included only if they are responding on behalf of their child or charge, and
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<ul class="circle"><li class="half_rhythm"><div>The baby or child of the parent or carer is under 5 years-old, or</div></li><li class="half_rhythm"><div>There is a clear rationale provided as to why the study is using parents’ or carers’ views on and experiences of healthcare as proxies for their child.</div></li></ul></div></li></ul>
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</td></tr><tr><th id="hd_b_niceng204er5.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Intervention</th><td headers="hd_b_niceng204er5.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">
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<ul><li class="half_rhythm"><div>Any tool (booklet, online webpage, tape, other materials, including those intended for shared decision making) used to convey information about risk or benefits of healthcare decision</div></li><li class="half_rhythm"><div>Included tools may use any means of conveying information (e.g. graphical depictions of risk, numbers, words, video).
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<ul class="circle"><li class="half_rhythm"><div>Numerical measures used in decision aid might include risks or benefits expressed in absolute terms (e.g. absolute risk difference, attributable risk) and/or in relative terms (e.g. various ratios such as risk ratio, odds ratio, hazard ratio).</div></li><li class="half_rhythm"><div>Graphical displays of risk information might include bar charts, Cates plots, crowd figures, icon arrays, pictograms, risk ladders, risk scale or thermometer scales)</div></li></ul></div></li></ul>
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</td></tr><tr><th id="hd_b_niceng204er5.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Comparison</th><td headers="hd_b_niceng204er5.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">
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<ul><li class="half_rhythm"><div>Different tools used to convey information about risk or benefits of healthcare decision</div></li><li class="half_rhythm"><div>No information tool used (e.g. verbal information only)</div></li></ul>
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</td></tr><tr><th id="hd_b_niceng204er5.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;">Outcome</th><td headers="hd_b_niceng204er5.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:middle;"><b>Critical:</b>
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<ul><li class="half_rhythm"><div>Children or young people’s satisfaction with information tool used, or decision made</div></li><li class="half_rhythm"><div>Knowledge or understanding of risks or benefits of decision</div></li></ul>
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<b>Important:</b>
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<ul><li class="half_rhythm"><div>Adverse outcomes due to intervention</div></li><li class="half_rhythm"><div>Congruence of the child or young person’s decision with the decision of the person that is engaging in shared decision-making</div></li><li class="half_rhythm"><div>Decisional conflict</div></li></ul></td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng204er5tab2"><div id="niceng204er5.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/NBK574979/table/niceng204er5.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er5.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng204er5.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><th id="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Intervention</th><th id="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Comparison</th><th id="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Outcomes</th></tr></thead><tbody><tr><td headers="hd_h_niceng204er5.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="#niceng204er5.s1.1.ref1" rid="niceng204er5.s1.1.ref1">Hulin 2017</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>RCT</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>To develop and pilot a decision aid to assist young people and their parents with the anaesthetic decisions (inhalation sedation, intravenous sedation or general anaesthetic) while undergoing dental treatment.</p>
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<p>UK</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=32 children and young people</p>
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<p>
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<b>Characteristics</b>
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</p>
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<p>
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<i>Characteristics only reported for total study population rather than per group.</i>
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</p>
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<p>Age in years [mean (SD)]: 13 (1.71)</p>
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<p>Age range in years: 10-16.</p>
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<p>Gender (M/F): 16/16</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<u>Decision aid + conventional clinical counselling</u>
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</p>
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<p>Conventional clinical counselling as per control group plus an A4 paper booklet containing information on dental anaesthesia.</p>
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<p>Content was informed by qualitative interviews and focus groups with children, young people, parents/guardians and dental professionals. It contained information on the anaesthesia options available and the advantages and disadvantages of the options. An explicit values clarification exercise and a short multiple-choice quiz were also included.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<u>Conventional clinical counselling</u>
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</p>
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<p>Given to children and young people and their parents/guardians after initial dental assessment as part of the paediatric pre-sedation service at the study hospital. Children and young people were able to use these counselling sessions to further discuss treatments and anaesthesia with healthcare professionals.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Critical
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<ul class="circle"><li class="half_rhythm"><div>Knowledge</div></li></ul></div></li><li class="half_rhythm"><div>Important
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<ul class="circle"><li class="half_rhythm"><div>Decisional conflict</div></li></ul></div></li></ul>
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</td></tr><tr><td headers="hd_h_niceng204er5.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="#niceng204er5.s1.1.ref2" rid="niceng204er5.s1.1.ref2">Parker 2017</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>RCT</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>To investigate the effectiveness of a patient decision-making aid in patients considering fixed appliance orthodontic treatment when compared to traditional information provision.</p>
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<p>UK</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=72 children and young people</p>
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<p>
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<b>Characteristics</b>
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</p>
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<p>Age in years [mean (SD)]:
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<ul><li class="half_rhythm"><div>Decision aid: 13.1 (1.7)
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<ul class="circle"><li class="half_rhythm"><div>10-13 [n (%)]: 22 (61.1)</div></li><li class="half_rhythm"><div>14-16 [n (%)]: 21 (38.9)</div></li></ul></div></li><li class="half_rhythm"><div>Standard information: 13.0 (1.8)
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<ul class="circle"><li class="half_rhythm"><div>10-13 [n (%)]: 21 (60.0)</div></li><li class="half_rhythm"><div>14-16 [n (%)]: 14 (40.0)</div></li></ul></div></li></ul>
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Gender (M/F):
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<ul><li class="half_rhythm"><div>Decision aid (n): 16/20</div></li><li class="half_rhythm"><div>Standard information (n): 11/24</div></li></ul></p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<u>Decision aid + standard information</u>
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</p>
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<p>Standard information as per the control group, plus an A4 booklet patient decision aid containing information on what fixed appliances are, what they are used for and what the patient can expect from them and the overall risk and benefits. Content was informed from interviews with children and young people. A decision-making tree was also included and questions to aid the decision-making process.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<u>Standard information</u>
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</p>
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<p>Verbal information and patients leaflets as per their clinicians standard care, plus standardised verbal information from a study researcher on the risks and benefits of fixed appliance orthodontic treatment.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Critical
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<ul class="circle"><li class="half_rhythm"><div>None</div></li></ul></div></li><li class="half_rhythm"><div>Important
|
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<ul class="circle"><li class="half_rhythm"><div>Decisional conflict</div></li></ul></div></li></ul>
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</td></tr><tr><td headers="hd_h_niceng204er5.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="#niceng204er5.s1.1.ref3" rid="niceng204er5.s1.1.ref3">Robbins 2003</a>
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</p>
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<p>
|
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<b>Study design</b>
|
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</p>
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<p>RCT</p>
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|
<p>
|
|
<b>Aim of the study</b>
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</p>
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<p>To investigate the effectiveness of a home visit and minor illnesses decision aid booklet for parents of infants compared to standard care.</p>
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<p>UK</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=103 parental proxies of babies</p>
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<p>
|
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<b>Characteristics</b>
|
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</p>
|
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<p>Age: not reported but intervention visit coincided with babies being 6 weeks old.</p>
|
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<p>Gender (M/F):
|
|
<ul><li class="half_rhythm"><div>Decision aid (n): 25/29</div></li><li class="half_rhythm"><div>Standard care (n): 27/22</div></li></ul></p>
|
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<p>
|
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<u>Information booklet + home visit</u>
|
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</p>
|
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<p>A booklet on minor illness education and care options was sent to families at the beginning of the study. A home visit with a study researcher occurred when the baby was 6 weeks old, discussing childhood illnesses, information on usual illnesses, details of how to contact health centre services. Booklet information were also discussed.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<p>
|
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<u>Standard care</u>
|
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</p>
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<p>Standard care as offered by health visitors.</p>
|
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<ul><li class="half_rhythm"><div>Critical
|
|
<ul class="circle"><li class="half_rhythm"><div>Knowledge</div></li></ul></div></li><li class="half_rhythm"><div>Important
|
|
<ul class="circle"><li class="half_rhythm"><div>None</div></li></ul></div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng204er5.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng204er5.s1.1.ref4" rid="niceng204er5.s1.1.ref4">Rowe 2018</a>
|
|
</p>
|
|
<p>
|
|
<b>Study design</b>
|
|
</p>
|
|
<p>RCT</p>
|
|
<p>
|
|
<b>Aim of the study</b>
|
|
</p>
|
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<p>To investigate the feasibility and acceptability of a RCT of self-harm decision aid in a school setting.</p>
|
|
<p>UK</p>
|
|
</td><td headers="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=23 young people</p>
|
|
<p>
|
|
<b>Characteristics</b>
|
|
</p>
|
|
<p>Age in years [n (%)]:
|
|
<ul><li class="half_rhythm"><div>Decision aid:
|
|
<ul class="circle"><li class="half_rhythm"><div>12-15: 8 (80)</div></li><li class="half_rhythm"><div>16-18: 2 (20)</div></li></ul></div></li><li class="half_rhythm"><div>Childline webpage:
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|
<ul class="circle"><li class="half_rhythm"><div>12-15: 12 (92)</div></li><li class="half_rhythm"><div>16-18: 1 (8)</div></li></ul></div></li></ul>
|
|
Gender (M/F):
|
|
<ul><li class="half_rhythm"><div>Decision aid (n): 4/6</div></li><li class="half_rhythm"><div>Childline webpage (n): 5/8</div></li></ul></p>
|
|
</td><td headers="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<u>My Self-Help Tool</u>
|
|
</p>
|
|
<p>A decision aid designed to inform young people with a history of self-harm of the difference help-seeking avenues. Users were also asked about what barriers to help-seeking were of particular concern to them (for example, confidentiality) and rated. After these questions, the aid presented users with a personalised set of help-seeking options, ranked according to acceptability to participants.</p>
|
|
</td><td headers="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<u>Childline webpage</u>
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</p>
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<p>A non-interactive, static Childline webpage consisting of general information on feelings and emotions but no decision aid component.</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Critical
|
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<ul class="circle"><li class="half_rhythm"><div>None</div></li></ul></div></li><li class="half_rhythm"><div>Important
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<ul class="circle"><li class="half_rhythm"><div>Decisional conflict</div></li></ul></div></li></ul>
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</td></tr><tr><td headers="hd_h_niceng204er5.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="#niceng204er5.s1.1.ref5" rid="niceng204er5.s1.1.ref5">Wyatt 2015</a>
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</p>
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<p>
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<b>Study design</b>
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</p>
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<p>Systematic review</p>
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<p>
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<b>Aim of the study</b>
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</p>
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<p>To investigate the various tools and techniques available to assist with implementing shared decision making in paediatric care and collate their reported effects on satisfaction, decisional conflict and knowledge using meta-analysis.</p>
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<p>Various countries</p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>K=15 studies</p>
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<p>Range of sample size:</p>
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<p>N=22 to 509</p>
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<p>
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<b>Characteristics</b>
|
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</p>
|
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<p>Participants:
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<ul><li class="half_rhythm"><div>Babies, children and young people, k=3</div></li><li class="half_rhythm"><div>Parents/guardians, k=13</div></li><li class="half_rhythm"><div>Clinicians, k=5</div></li></ul>
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Format:
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<ul><li class="half_rhythm"><div>Electronic, k=37</div></li><li class="half_rhythm"><div>Paper, k=13</div></li><li class="half_rhythm"><div>Live sessions, k=7</div></li><li class="half_rhythm"><div>Other k=2</div></li></ul></p>
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</td><td headers="hd_h_niceng204er5.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
|
|
<u>Decision aids</u>
|
|
</p>
|
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<p>Any tool or method designed to facilitate medical shared-decision making between babies, children and young people, their parents/carers and healthcare professionals.</p>
|
|
</td><td headers="hd_h_niceng204er5.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<p>
|
|
<u>Control</u>
|
|
</p>
|
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<p>Included studies were not limited by comparator groups.</p>
|
|
</td><td headers="hd_h_niceng204er5.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Critical
|
|
<ul class="circle"><li class="half_rhythm"><div>Satisfaction</div></li><li class="half_rhythm"><div>Knowledge</div></li></ul></div></li><li class="half_rhythm"><div>Important
|
|
<ul class="circle"><li class="half_rhythm"><div>Decisional conflict</div></li></ul></div></li></ul>
|
|
</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">F: female; K: number of studies; M: male; N: number; RCT: randomised controlled trials; SD: standard deviation</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng204er5tab3"><div id="niceng204er5.tab3" class="table"><h3><span class="label">Table 3</span><span class="title">Summary of the evidence from reference and focus groups</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK574979/table/niceng204er5.tab3/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er5.tab3_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng204er5.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Age groups</th><td headers="hd_b_niceng204er5.tab3_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>7-11 years</div></li><li class="half_rhythm"><div>11-14 years</div></li></ul>
|
|
</td></tr><tr><th id="hd_b_niceng204er5.tab3_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Areas covered</th><td headers="hd_b_niceng204er5.tab3_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<ul><li class="half_rhythm"><div>Explaining risks and benefits in advance of medical procedures</div></li></ul>
|
|
</td></tr><tr><th id="hd_b_niceng204er5.tab3_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Illustrative quotes</th><td headers="hd_b_niceng204er5.tab3_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
<ul><li class="half_rhythm"><div>‘If I know the risks it would make me feel better’</div></li><li class="half_rhythm"><div>‘I want to know the risks but don’t want to get scared, so could say what the risks are but then say all the things they were doing to stop the risks’</div></li><li class="half_rhythm"><div>‘If they told you, you would be in pain you would be really worried and wouldn’t want your teeth pulled out so might try to fix it yourself and not go in’</div></li><li class="half_rhythm"><div>How should risks and benefits of having a vaccine be explained?
|
|
<ul class="circle"><li class="half_rhythm"><div>‘A side effect is that you may feel sick after’</div></li><li class="half_rhythm"><div>‘When you’re done you get stickers’</div></li><li class="half_rhythm"><div>‘There may be temporary side effects but I’m much more protected now’</div></li></ul></div></li></ul>
|
|
</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng204er5appktab1"><div id="niceng204er5.appk.tab1" class="table"><h3><span class="label">Table 11</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/NBK574979/table/niceng204er5.appk.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng204er5.appk.tab1_lrgtbl__"><table><thead><tr><th id="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Reason for Exclusion</th></tr></thead><tbody><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Ahn, J. H., Power, S., Thickett, E., Andiappan, M., Newton, T., Information retention of orthodontic patients and parents: a randomized controlled trial, American journal of orthodontics and dentofacial orthopedics, 156, 169–177.e2, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/31375226" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31375226</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Intervention not in protocol – Education on orthodontic treatment only. No decision component.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Alvarez, Kiara, Wang, Ye, Alegria, Margarita, Ault-Brutus, Andrea, Ramanayake, Natasha, Yeh, Yi-Hui, Jeffries, Julia R., Shrout, Patrick E., Psychometrics of shared decision making and communication as patient centered measures for two language groups, Psychological assessment, 28, 1074–86, 2016 [<a href="/pmc/articles/PMC5431590/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5431590</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27537002" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27537002</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country not in protocol - USA</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Anzinger, H., Elliott, S. A., Hartling, L., Comparative Usability Analysis and Parental Preferences of Three Web-Based Knowledge Translation Tools: Multimethod Study, Journal of medical Internet research, 22, e14562, 2020 [<a href="/pmc/articles/PMC7101501/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7101501</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32167478" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32167478</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population not in protocol - Parents of children under 18 years old, with no further information on ages of children</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Aronson, P. L., Shapiro, E. D., Niccolai, L. M., Fraenkel, L., Shared Decision-Making with Parents of Acutely Ill Children: A Narrative Review, Academic pediatrics, 18, 3–7, 2018 [<a href="/pmc/articles/PMC5756675/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5756675</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28723588" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28723588</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Outcomes not in protocol - No quantitative data presented. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Aventin, A., French, R., Young, H., McDaid, L., Lewis, R., Warren, E., McConnon, L., Lohan, M., Acceptability of an interactive film-based intervention targeting adolescent boys to prevent sexual risk-taking: findings from the JACK cluster randomised controlled trial process evaluation, The Lancet, 394, S5, 2019
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Barber, S., Bekker, H., Marti, J., Pavitt, S., Khambay, B., Meads, D., Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment, Patient, 12, 137–148, 2019 [<a href="/pmc/articles/PMC6335368/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6335368</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30367434" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30367434</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design not in protocol - Cross-sectional</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bekker, H. L., Luther, F., Buchanan, H., Developments in making patients’ orthodontic choices better, Journal of Orthodontics, 37, 217–24, 2010 [<a href="https://pubmed.ncbi.nlm.nih.gov/20805351" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20805351</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Narrative review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bekker, H., Thornton, J. G., Airey, C. M., Connelly, J. B., Hewison, J., Robinson, M. B., Lilleyman, J., MacIntosh, M., Maule, A. J., Michie, S., Pearman, A. D., Informed decision making: An annotated bibliography and systematic review, Health technology assessment, 3, iii–150, 1999 [<a href="https://pubmed.ncbi.nlm.nih.gov/10350446" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10350446</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population not in protocol - Mixture of adults and children with results not presented separately for target population.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Boland, L., Graham, I. D., Legare, F., Lewis, K., Jull, J., Shephard, A., Lawson, M. L., Davis, A., Yameogo, A., Stacey, D., Barriers and facilitators of pediatric shared decision-making: a systematic review, Implementation science : IS, 14, 7, 2019 [<a href="/pmc/articles/PMC6339273/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6339273</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30658670" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30658670</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Boland, Laura, Legare, France, McIsaac, Daniel I., Graham, Ian D., Monica, Taljaard, Decary, Simon, Stacey, Dawn, SURE Test Accuracy for Decisional Conflict Screening among Parents Making Decisions for Their Child, Medical decision making : an international journal of the Society for Medical Decision Making, 272989X19884541, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/31731879" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31731879</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country not in protocol - Canada</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Boland, Laura, Legare, France, McIsaac, Daniel I., Graham, Ian D., Taljaard, Monica, Decary, Simon, Stacey, Dawn, SURE Test Accuracy for Decisional Conflict Screening among Parents Making Decisions for Their Child, Medical decision making : an international journal of the Society for Medical Decision Making, 39, 1010–1018, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/31731879" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31731879</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country not in protocol - Canada</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Chi, N. C., Demiris, G., A systematic review of telehealth tools and interventions to support family caregivers, Journal of Telemedicine & Telecare, 21, 37–44, 2015 [<a href="/pmc/articles/PMC4486048/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4486048</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25475220" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25475220</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Coronado-Vazquez, Valle, Navarro-Abal, Yolanda, Magallon-Botaya, Rosa, Cerezo Espinosa de Los Monteros, Javier, Cruz-Salgado, Oscar, Gomez-Salgado, Juan, Ramirez Duran, M. Del Valle, [Applicability of decision aids in emergency departments: an exploratory review], Aplicabilidad de las herramientas de ayuda a la toma de decisiones compartidas en los servicios de Urgencias: una revision exploratoria., 93, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/31723118" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31723118</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Non-English language paper</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Coyne, I., O’Mathúna, D. P., Gibson, F., Shields, L., Leclercq, E., Sheaf, G., Interventions for promoting participation in shared decisionâ making for children with cancer, Cochrane Database of Systematic Reviews, 2016 [<a href="/pmc/articles/PMC6734120/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6734120</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27898175" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27898175</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Empty systematic review - no included studies.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Donovan, E., Little, P., Willcox, M. L., Wilcox, C. R., Patel, S., Hay, A. D., Digital interventions for parents of acutely ill children and their treatment-seeking behaviour: A systematic review, British Journal of General Practice, 70, E172–E178, 2020 [<a href="/pmc/articles/PMC7015163/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7015163</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32041764" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32041764</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Edbrooke-Childs, Julian, Edridge, Chloe, Averill, Phoebe, Delane, Louise, Hollis, Chris, Craven, Michael P., Martin, Kate, Feltham, Amy, Jeremy, Grace, Deighton, Jessica, Wolpert, Miranda, A Feasibility Trial of Power Up: Smartphone App to Support Patient Activation and Shared Decision Making for Mental Health in Young People, JMIR mHealth and uHealth, 7, e11677, 2019 [<a href="/pmc/articles/PMC6682268/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6682268</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31165709" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31165709</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Outcomes not in protocol - No quantitative data presented.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Feinstein, M. M., Adegboye, J., Niforatos, J. D., Pescatore, R. M., Informed consent for invasive procedures in the emergency department, American Journal of Emergency Medicine, 2020 [<a href="https://pubmed.ncbi.nlm.nih.gov/32037122" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32037122</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Flynn,D., Knoedler,M.A., Hess,E.P., Murad,M.H., Erwin,P.J., Montori,V.M., Thomson,R.G., Engaging patients in health care decisions in the emergency department through shared decision-making: A systematic review, Academic Emergency Medicine, 19, 959–967, 2012 [<a href="https://pubmed.ncbi.nlm.nih.gov/22853804" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22853804</span></a>]
|
|
</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Garanito, Marlene Pereira, Zaher-Rutherford, Vera Lucia, ADOLESCENT PATIENTS AND THE CLINICAL DECISION ABOUT THEIR HEALTH, Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo, 37, 503–509, 2019 [<a href="/pmc/articles/PMC6821484/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6821484</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31241694" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31241694</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Geerards, D., Pusic, A., Hoogbergen, M., van der Hulst, R., Sidey-Gibbons, C., Computerized Quality of Life Assessment: A Randomized Experiment to Determine the Impact of Individualized Feedback on Assessment Experience, Journal of medical Internet research, 21, e12212, 2019 [<a href="/pmc/articles/PMC6657452/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6657452</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31298217" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31298217</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country not in protocol - USA</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Gurung, G., Richardson, A., Wyeth, E., Edmonds, L., Derrett, S., Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review, Health expectations : an international journal of public participation in health care and health policy, 23, 261–273, 2020 [<a href="/pmc/articles/PMC7104655/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7104655</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31981295" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31981295</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Liverpool, S., Pereira, B., Hayes, D., Wolpert, M., Edbrooke-Childs, J., A scoping review and assessment of essential elements of shared decision-making of parent-involved interventions in child and adolescent mental health, European Child and Adolescent Psychiatry, 2020 [<a href="/pmc/articles/PMC8440241/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8440241</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32300893" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32300893</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Scoping review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Muller, K., Tao, R., Goring, S., Lane, S., Use of discrete choice experiments designed with a single scenario and two or more choices: A systematic review, Value in health, 19, A92, 2016
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Neill, S., Roland, D., Jones, C. H. D., Thompson, M., Lakhanpaul, M., Information resources to aid parental decision-making on when to seek medical care for their acutely sick child: A narrative systematic review, BMJ open, 5 (12) (no pagination), 2015 [<a href="/pmc/articles/PMC4691730/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4691730</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26674495" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26674495</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Nicholson, E., McDonnell, T., De Brun, A., Barrett, M., Bury, G., Collins, C., Hensey, C., McAuliffe, E., Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare - systematic review, BMC health services research, 20, 663, 2020 [<a href="/pmc/articles/PMC7366445/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7366445</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32680518" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32680518</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Reilly, S., Competency to consent to research and treatment: Methods for assessing capacity and improving patient understanding, World Journal for Pediatric and Congenital Heart Surgery, 10, NP47, 2019
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Robles, N., Carrion, C., Ribas, I., Pamias, M., Parra, I., Conesa, J., Perez-Navarro, A., Alabert, M., Aymerich, M., A mobile clinical decision support system for autism spectrum disorder, International Journal of Technology Assessment in Health Care, 35, 68–69, 2019
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Poster presentation.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Sarrami-Foroushani, P., Travaglia, J., Debono, D., Braithwaite, J., Implementing strategies in consumer and community engagement in health care: results of a large-scale, scoping meta-review, BMC health services research, 14, 402, 2014 [<a href="/pmc/articles/PMC4177168/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4177168</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25230846" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25230846</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Scoping review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Schmidtke, K. A., Watson, D. G., Vlaev, I., The use of control charts by laypeople and hospital decision-makers for guiding decision making, Quarterly journal of experimental psychology (2006), 70, 1114–1128, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/27028900" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27028900</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population not in protocol - Health professionals and people >18 years old.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Scott, J. T., Harmsen, M., Prictor, M. J., Sowden, A. J., Watt, I., Interventions for improving communication with children and adolescents about their cancer, Cochrane database of systematic reviews (Online), CD002969, 2003 [<a href="https://pubmed.ncbi.nlm.nih.gov/12917938" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12917938</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies checked for relevance.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Steciuk, K., Wang, X., Holch, P., Incidence, risks and information and support needs of patients and their carers experiencing cancer and stroke: A scoping review, Psycho-Oncology, 29, 23, 2020
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Poster presentation</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Stephenson, Judith, Bailey, Julia V., Gubijev, Ana, D’Souza, Preethy, Oliver, Sandy, Blandford, Ann, Hunter, Rachael, Shawe, Jill, Rait, Greta, Brima, Nataliya, Copas, Andrew, An interactive website for informed contraception choice: randomised evaluation of Contraception Choices, Digital health, 6, 2055207620936435, 2020 [<a href="/pmc/articles/PMC7359649/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7359649</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32704380" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32704380</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population not in protocol - Women aged 15-30 with results not presented separately for target population.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Talen, Mary R., Muller-Held, Christine F., Eshleman, Kate Grampp, Stephens, Lorraine, Patients’ communication with doctors: a randomized control study of a brief patient communication intervention, Families, systems & health : the journal of collaborative family healthcare, 29, 171–83, 2011 [<a href="https://pubmed.ncbi.nlm.nih.gov/21787080" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21787080</span></a>]
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population not in protocol - People >18 years old.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Teela, L., Verhagen, L., Grootenhuis, M., Haverman, L., Participation of pediatric patients in hospital care, research and intervention development: A systematic review, Quality of Life Research, 27, S149–S150, 2018
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Conference abstract.</td></tr><tr><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Triantafyllidis, Andreas, Polychronidou, Eleftheria, Alexiadis, Anastasios, Rocha, Cleilton Lima, Oliveira, Douglas Nogueira, da Silva, Amanda S., Freire, Ananda Lima, Macedo, Crislanio, Sousa, Igor Farias, Werbet, Eriko, Lillo, Elena Arredondo, Luengo, Henar Gonzalez, Ellacuria, Macarena Torrego, Votis, Konstantinos, Tzovaras, Dimitrios, Abdullah, Ahmed Armijo-Olivo Ben-Zvi Blum Butler Cruz Donsa Dugan Dyrstad Falagas Fergus Fiechtner Gance-Cleveland Gance-Cleveland Gultepe Hastie Hendrix Kornman Lamboglia Lau Lazarou LeBlanc Lim Lingren Martinez-Perez Mirzaei Moher Moja Murdoch Nguyen Nguyen Nguyen Obermeyer Pakarinen Peng Polacsek Price Rios-Julian Roshanov Salvatore Schmiege Shaikh Shields Simmonds Smith Song Staiano Tate Taveras Taveras Taveras Taveras Triantafyllidis Triantafyllidis Triantafyllidis Tripicchio Turner Vucenik Wiechmann Witten Yacef Yoong Zheng Ziauddeen, Computerized decision support and machine learning applications for the prevention and treatment of childhood obesity: A systematic review of the literature, Artificial Intelligence in Medicine, 104, 2020
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</td><td headers="hd_h_niceng204er5.appk.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic review. Included studies 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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