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<meta name="citation_keywords" content="Meningococcal Infections">
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stroke-linecap="round" style="fill:#FFF" d="m320,350a153,153 0 1,0-2,2l170,170m-91-117 110,110-26,26-110-110"></path></svg></a><a id="jr-fip-done" class="wsprkl btn" title="Dismiss find">✘</a></nav><nav id="jr-fip-info-p"><a id="jr-fip-prev" class="wsprkl btn" title="Jump to previuos match">◀</a><button id="jr-fip-matches">no matches yet</button><a id="jr-fip-next" class="wsprkl btn" title="Jump to next match">▶</a></nav></nav></div><div id="jr-epub-interstitial" class="hidden"></div><div id="jr-content"><article data-type="main"><div class="main-content lit-style"><div class="fm-sec bkr_bottom_sep"><div class="bkr_thumb"><a href="https://www.nice.org.uk" title="National Institute for Health and Care Excellence (NICE)" class="img_link icnblk_img" ref="pagearea=logo&targetsite=external&targetcat=link&targettype=publisher"><img class="source-thumb" src="/corehtml/pmc/pmcgifs/bookshelf/thumbs/th-niceng195er10-lrg.png" alt="Cover of Evidence review on information for confirmed bacterial meningitis" /></a></div><div class="bkr_bib"><h1 id="_NBK604280_"><span itemprop="name">Evidence review on information for confirmed bacterial meningitis</span></h1><div class="subtitle">Neonatal infection: antibiotics for prevention and treatment</div><p><b>Evidence review J</b></p><p><i>NICE Guideline, No. 195</i></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">2024 Mar</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-5800-9</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2024.</div></div><div class="bkr_clear"></div></div><div id="niceng195er10.s1"><h2 id="_niceng195er10_s1_">Information for confirmed bacterial meningitis or meningococcal disease</h2><div id="niceng195er10.s1.1"><h3>Review question</h3><p>What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</p><div id="niceng195er10.s1.1.1"><h4>Introduction</h4><p>Bacterial meningitis and meningococcal disease (meningococcal sepsis with or without an associated meningitis) are rare but serious infections, which can occur in any age group.</p><p>When a diagnosis of bacterial meningitis or meningococcal disease is confirmed, patients and their families or carers will naturally have many concerns and questions.</p><p>The aim of this review is to determine what information patients, and their families or carers value, when a diagnosis of bacterial meningitis or meningococcal disease is confirmed.</p></div><div id="niceng195er10.s1.1.2"><h4>Summary of the protocol</h4><p>See <a href="/books/NBK604280/table/niceng195er10.tab1/?report=objectonly" target="object" rid-ob="figobniceng195er10tab1">Table 1</a> for a summary of the Population, Phenomenon of Interest and Context (PPC) characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng195er10tab1"><a href="/books/NBK604280/table/niceng195er10.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img" rid-ob="figobniceng195er10tab1"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng195er10.tab1"><a href="/books/NBK604280/table/niceng195er10.tab1/?report=objectonly" target="object" rid-ob="figobniceng195er10tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol (PPC table). </p></div></div><p>For further details see the review protocol in <a href="#niceng195er10.appa">appendix A</a>.</p></div><div id="niceng195er10.s1.1.3"><h4>Methods and process</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>. Methods specific to this review question are described in the review protocol in <a href="#niceng195er10.appa">appendix A</a> and the <a href="https://urlsand.esvalabs.com/?u=http%3A%2F%2Fwww.nice.org.uk%2FGuidance%2Fng240%2Fevidence&e=9f250c40&h=5a5e103f&f=y&p=n" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">methods document for the NICE guideline on bacterial meningitis and meningococcal disease</a>.</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng195er10.s1.1.4"><h4>Qualitative evidence</h4><div id="niceng195er10.s1.1.4.1"><h5>Included studies</h5><p>Four studies were included in this review, 2 mixed-methods studies (<a class="bibr" href="#niceng195er10.s1.ref1" rid="niceng195er10.s1.ref1">Clark 2013</a>, <a class="bibr" href="#niceng195er10.s1.ref4" rid="niceng195er10.s1.ref4">Wisemantel 2018</a>), and 2 qualitative studies (<a class="bibr" href="#niceng195er10.s1.ref2" rid="niceng195er10.s1.ref2">Haines 2005</a>, <a class="bibr" href="#niceng195er10.s1.ref3" rid="niceng195er10.s1.ref3">Sweeney 2013</a>).</p><p>The included studies are summarised in <a href="/books/NBK604280/table/niceng195er10.tab2/?report=objectonly" target="object" rid-ob="figobniceng195er10tab2">Table 2</a>.</p><p>All studies reported the views and experiences of parents or carers of babies, children, and young people with confirmed bacterial meningitis or meningococcal disease.</p><p>The data from the included studies were synthesised and a number of central themes and sub-themes emerged (as shown in <a class="figpopup" href="/books/NBK604280/figure/niceng195er10.fig1/?report=objectonly" target="object" rid-figpopup="figniceng195er10fig1" rid-ob="figobniceng195er10fig1">Figure 1</a>).</p><p>One study was from the UK and Ireland (<a class="bibr" href="#niceng195er10.s1.ref1" rid="niceng195er10.s1.ref1">Clark 2013</a>), 1 study was from England (<a class="bibr" href="#niceng195er10.s1.ref2" rid="niceng195er10.s1.ref2">Haines 2005</a>), 1 study was from the UK (<a class="bibr" href="#niceng195er10.s1.ref3" rid="niceng195er10.s1.ref3">Sweeney 2013</a>), and 1 study was from Australia (<a class="bibr" href="#niceng195er10.s1.ref4" rid="niceng195er10.s1.ref4">Wisemantel 2018</a>).</p><p>See the literature search strategy in <a href="#niceng195er10.appb">appendix B</a> and study selection flow chart in <a href="#niceng195er10.appc">appendix C</a>.</p></div><div id="niceng195er10.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="#niceng195er10.appj">appendix J</a>.</p></div></div><div id="niceng195er10.s1.1.5"><h4>Summary of included studies</h4><p>Summaries of the studies that were included in this review are presented in <a href="/books/NBK604280/table/niceng195er10.tab2/?report=objectonly" target="object" rid-ob="figobniceng195er10tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng195er10tab2"><a href="/books/NBK604280/table/niceng195er10.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img" rid-ob="figobniceng195er10tab2"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng195er10.tab2"><a href="/books/NBK604280/table/niceng195er10.tab2/?report=objectonly" target="object" rid-ob="figobniceng195er10tab2">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="#niceng195er10.appd">appendix D</a>.</p><p>This was a qualitative meta-synthesis, so no quantitative meta-analysis was conducted (and there are no forest plots in <a href="#niceng195er10.appe">appendix E</a>).</p></div><div id="niceng195er10.s1.1.6"><h4>Summary of the evidence</h4><p>The evidence generated 6 main themes in relation to the information valued by parents, their families, and carers when bacterial meningitis or meningococcal disease is confirmed. Two studies provided the evidence relating to information at diagnosis, which had no subthemes. Two studies provided the evidence relating to information during hospitalisation, which had 3 subthemes (child’s physical appearance, disease process and complications of the disease). Two studies provided the evidence relating to information on discharge from hospital, which had 3 subthemes (navigating the system, long-term effects and follow-up). Two studies provided the evidence relating to information format, which had 3 subthemes (written, detailed and lay language). Two studies provided the evidence relating to information sources, which had 3 subthemes (medical staff, nursing staff and internet). Four studies provided the evidence relating to communication, which had 5 subthemes (standardised, clear, lay language, involving parents and enhanced communication between healthcare professionals). The overarching themes and subthemes were developed to allow subthemes on a common topic to be grouped to aid presentation of results, without obscuring the detail included within the individual subthemes. For example, the subthemes on information sources all related to different sources of information that parents and carers had reported using and what their views about these different sources were. The theme map (<a class="figpopup" href="/books/NBK604280/figure/niceng195er10.fig1/?report=objectonly" target="object" rid-figpopup="figniceng195er10fig1" rid-ob="figobniceng195er10fig1">Figure 1</a>) illustrates these overarching themes and related subthemes.</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng195er10fig1" co-legend-rid="figlgndniceng195er10fig1"><a href="/books/NBK604280/figure/niceng195er10.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng195er10fig1" rid-ob="figobniceng195er10fig1"><img class="small-thumb" src="/books/NBK604280/bin/niceng195er10f1.gif" src-large="/books/NBK604280/bin/niceng195er10f1.jpg" alt="Figure 1. Theme map." /></a><div class="icnblk_cntnt" id="figlgndniceng195er10fig1"><h4 id="niceng195er10.fig1"><a href="/books/NBK604280/figure/niceng195er10.fig1/?report=objectonly" target="object" rid-ob="figobniceng195er10fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map. BM: Bacterial Meningitis; MD: Meningococcal disease ++ = high quality evidence; + = moderate quality evidence; - = low quality evidence</p></div></div><p>No evidence relevant to the themes of information content, decision making, or timing of information provision, that were included as phenomenon of interest in the protocol were identified.</p><p>A summary of the strength of evidence, assessed using GRADE-CERQual, is presented for each of the sub-themes in the theme map above. The main reasons for downgrading were due to concerns about the methodological limitations of the primary studies (for example, because of a lack of consideration of the relationship between researcher and participants, no justification for data collection methods as it relates to data saturation and potential for recruitment bias), concerns about relevance (for example, because studies restricted the population to meningococcal disease, thereby under-representing less severe forms of the disease), and concerns about adequacy (for example, for review findings when evidence offered no or only some or moderately rich data).</p><p>Findings from the studies are summarised in GRADE-CERQual tables. See the evidence profiles in <a href="#niceng195er10.appf">appendix F</a> for details.</p></div><div id="niceng195er10.s1.1.7"><h4>Economic evidence</h4><div id="niceng195er10.s1.1.7.1"><h5>Included studies</h5><p>A single economic search was undertaken for all topics included in the scope of this guideline, but no economic studies were identified which were applicable to this review question.</p></div></div><div id="niceng195er10.s1.1.8"><h4>Economic model</h4><p>No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation. This was because this review does not involve a comparison of competing courses of action.</p></div><div id="niceng195er10.s1.1.9"><h4>The committee’s discussion and interpretation of the evidence</h4><div id="niceng195er10.s1.1.9.1"><h5>The outcomes that matter most</h5><p>The review focused on the views and experiences of the information provided when bacterial meningitis and/or meningococcal disease is confirmed. The committee identified a number of potential themes as illustrative of the main themes to guide the review. These themes were information content (including prognosis), information format, information sources, decision making, timing of information provision, information about follow-up, language, and communication. However, the potential themes were not exhaustive, as the committee did not want to constrain the evidence, and an emergent approach was taken to the thematic synthesis.</p></div><div id="niceng195er10.s1.1.9.2"><h5>The quality of the evidence</h5><p>The evidence was assessed using GRADE-CERQual methodology, and the overall confidence in the findings ranged from low to high. Assessments of the potential methodological limitations of the primary studies were undertaken using the CASP checklist; overall concerns about methodological limitations were rated as “minor concerns for all the review findings”. The most common issues were lack of consideration of the relationship between researcher and participants, no justification for data collection methods as it relates to data saturation and potential for recruitment bias. Concerns about relevance was “minor” for all review findings, which was due to studies restricting population to meningococcal disease with the potential to under-represent less severe forms of the disease. Concerns about coherence were “no or very minor” for all the review findings, as there was no data that contradicted the findings nor was there ambiguous data. Concerns about adequacy ranged from “no or very minor” to “serious”. There were serious concerns for review findings when evidence offered no rich data, moderate concerns for review findings when evidence offered some rich data and minor concerns for review findings that were based on evidence offering moderately rich data. The number of studies contributing to each subtheme ranged from 1 to 3.</p><p>No evidence was identified for the following outcomes: theme of information content, decision making, or timing of information provision.</p></div><div id="niceng195er10.s1.1.9.3"><h5>Benefits and harms</h5><p>All the evidence identified for this review focused on the views of parents or carers. However, the committee agreed that the recommendations made should apply equally to people with confirmed bacterial meningitis or meningococcal disease themselves. However, they acknowledged that there may be differences in the types and delivery of information provided to people with confirmed bacterial meningitis or meningococcal disease and their parents or carers due to factors such as the developmental age of the individual and the impact of the illness on the person’s ability to communicate. The committee noted that there were no differences in the emergent themes based on whether the diagnosis was bacterial meningitis or meningococcal disease.</p><p>The protocol for this evidence review did not include neonates because the NICE guidance on <a href="https://www.nice.org.uk/guidance/ng195/chapter/Recommendations" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Neonatal infection</a> includes recommendations on information. However, the committee highlighted that the information needs covered in this review are very specific to bacterial meningitis and overlap significantly with recommendations about responding to potential long-term complications (which include neonates) and agreed that the recommendations about information post diagnosis that applied to babies (28 days to 1 year) should be extended to neonates.</p><p>The committee were aware of existing NICE guidance on <a href="https://www.nice.org.uk/Guidance/CG138" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">patient experience in adult NHS services</a> and <a href="https://www.nice.org.uk/guidance/ng204" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">babies, children and young people’s experience of healthcare</a>, and focused recommendations on information needs that were specific to bacterial meningitis and meningococcal disease.</p><p>There was moderate quality evidence from theme 1 (information at diagnosis) that parents would like more information about meningitis, diagnosis and treatment, and better communication regarding this. Based on this evidence, and their clinical knowledge and experience, the committee recommended that people with bacterial meningitis or meningococcal disease, their families and carers should be provided with information about what might happen during the course of the disease. The committee also agreed that information should include uncertainty around prognosis as the potential for long-term complications may not be apparent at this stage. However, the committee highlighted that, in their experience, fear often originates from a lack of information and, therefore, agreed that keeping people with bacterial meningitis or meningococcal disease and their parents or carers informed on when they can expect to know more is important to reduce anxiety. The committee acknowledged the importance of tailoring the information that is given to individual circumstances as providing people with information about all the possible short and long-term outcomes of bacterial meningitis and meningococcal disease and potential requirement of critical care in circumstances where people are alert and responding well to treatment may cause unnecessary alarm. Based on their knowledge and experience, the committee agreed people should be told about the risk of passing on the infection as this is something that is frequently asked about. They noted this may be particularly important for meningitis in neonates caused by group B streptococcus as antibiotic prophylaxis may be required during labour in subsequent pregnancies. The committee acknowledged that meningococcal and Hib (Haemophilus influenzae type b) infections are notifiable diseases and recommended that people with meningococcal or Hib infection and their parents, family members and carers should be made aware that preventative measures (for example, isolation) may be needed for close contacts.</p><p>Moderate quality evidence from theme 2 (information during hospitalisation) highlighted the need for more information during this phase of illness. Specifically, subtheme 2.1 (child’s physical appearance) showed that parents did not feel prepared for how different their child looked, or how they would act when withdrawing from sedative treatment and found this distressing. Therefore, the committee recommended that people are informed about how the illness, or its treatment, may affect appearance or behaviour. The committee highlighted some examples of how appearance may be affected based on their experience, including the presence of drips or other invasive devices, the potential for swelling associated with fluid resuscitation in people with septic shock, and the spreading of rashes or changes in skin colour associated with meningococcal disease. The recommendation also included the provision of information about the effects of sedative withdrawal (such as agitation or abnormal neurological behaviour). As discussed above, the committee discussed and agreed the importance of tailoring information so that it is relevant to the individual circumstances.</p><p>Sub-theme 2.2 (disease process) indicated that parents would like more information on the disease process and the opportunity to ask questions, particularly when their child was in an intensive care unit. The committee agreed that the opportunity to ask questions was important and recommended, based on their experience, that information should be repeated, people should be given multiple opportunities to ask questions and understanding should be checked, as people may be very distressed or fearful initially which may impact their ability to process or understand the information provided and they may need time to digest the information before asking questions.</p><p>Theme 3 (information on discharge from hospital) provided low to moderate quality evidence about areas where people wanted more information at the point of discharge from hospital. Specially, sub-theme 3.1 (navigating the system) provided evidence that people had to learn how to navigate the system themselves and didn’t know what to do next to access support, sub-theme 3.2 (long-term effects) further highlighted that people wanted more information about potential complications and long-term effects of illness, and sub-theme 3.3 (follow-up) indicated that there was a lack of clarity about the follow-up plan following discharge and again, some parents reported being told to ‘wait and see’. The committee agreed that information about these areas was important and therefore, recommended that people are provided with information about how they can access support (for example, contact details of meningitis charities) and what follow-up can be expected now and in the longer term in terms of assessments and aftercare. There was moderate quality evidence from sub-theme 2.3 (complications of disease) that parents were unaware of potential complications associated with bacterial meningitis or meningococcal disease and that they would have felt more prepared had information provision been better. The committee were aware that, based on their knowledge and experience as well as evidence from the reviews on long term complications (see evidence reviews I1 and I2), that there is a wide range of potential long-term complications that can occur, many of which may not be evident for several months, or potentially years in the case of neurodevelopmental outcomes in children. Therefore, the committee recommended that people should be made aware of potential long-term complications and uncertainties about what long-term complications they might experience. The committee also recommended that the follow-up plan is documented in a discharge summary so that people have detailed written information that they can refer to.</p><p>Based on their clinical experience of frequently asked questions, the committee recommended that people are provided with information on when they can likely resume normal activities, such as driving or travel, work or education, and exercise or sports, and the follow-up considerations which may affect these things.</p><p>There was moderate quality evidence from sub-theme 6.5 (enhanced communication between healthcare professionals) that parents reported poor communication between different specialists which results in support that was unresponsive to needs; however, when different professionals did communicate, they felt there were shared plans and goals that helped to meet their child’s needs. Therefore, the committee recommended that the hospital team should coordinate with tertiary and primary care and other specialists, and allied professionals and community teams (for example, audiology, and speech and language therapy departments) that will be involved in follow-up. The committee agreed this was important for ensuring that needs are effectively met and to avoid gaps in the provision of care.</p><p>There was moderate quality evidence from sub-theme 6.3 (lay-language) that the use of lay language was important so that parents could understand everything that was going on. The committee agreed that they did not need to make a specific recommendation about this as the use of simple, clear language that avoids jargon is covered by the guidelines cross-referenced above.</p></div><div id="niceng195er10.s1.1.9.4"><h5>Cost effectiveness and resource use</h5><p>This qualitative review question did not consider decisions between competing alternatives and therefore is not directly relevant to the tools of economic evaluation. Whilst communication and information provision do consume resources, they are also a vital and routine part of healthcare provision. The committee felt their recommendations reflected good practice which would not entail a significant resource impact to the NHS and would help promote the provision of information that is valued by patients and carers when bacterial meningitis or meningococcal disease has been confirmed.</p></div></div><div id="niceng195er10.s1.1.10"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.1.12, 1.1.13, 1.14.3, 1.14.19 and 1.14.20. Other evidence supporting these recommendations can be found in the evidence review on support for confirmed bacterial meningitis or meningococcal disease.</p></div></div><div id="niceng195er10.s1.rl.r1"><h3>References – included studies</h3><ul class="simple-list"><div id="niceng195er10.s1.rl.r1.1"><h4>Qualitative</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng195er10.s1.ref1"><p id="p-114">
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<strong>Clark 2013</strong>
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</p>Clark, L. J., Glennie, L., Audrey, S., Hickman, M., Trotter, C. L.
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The health, social and educational needs of children who have survived meningitis and septicaemia: the parents’ perspective. BMC public health,13, 954, 2013
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[<a href="/pmc/articles/PMC3852620/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3852620</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/24112360" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24112360</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng195er10.s1.ref2"><p id="p-115">
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<strong>Haines 2005</strong>
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</p>Haines, C.
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Parents’ experiences of living through their child’s suffering from and surviving severe meningococcal disease. Nursing in critical care, 10, 78–89, 2005
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[<a href="https://pubmed.ncbi.nlm.nih.gov/15839239" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15839239</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng195er10.s1.ref3"><p id="p-116">
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<strong>Sweeney 2013</strong>
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</p>Sweeney, F., Viner, R. M., Booy, R., Christie, D.
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Parents’ experiences of support during and after their child’s diagnosis of meningococcal disease. Acta Paediatrica, 102, e126–30, 2013
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[<a href="https://pubmed.ncbi.nlm.nih.gov/23205710" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23205710</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng195er10.s1.ref4"><p id="p-117">
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<strong>Wisemantel 2018</strong>
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</p>Wisemantel, M., Maple, M., Massey, P. D., Osbourn, M., Kohlhagen, J.
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Psychosocial challenges of invasive meningococcal disease for children and their families. Australian Social Work, 71, 478–490, 2018.</div></p></li></ul></div><div id="niceng195er10.s1.rl.r1.2"><h4>Economic</h4><ul class="simple-list"><p>No studies were identified which were applicable to this review question.</p></ul></div></ul></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng195er10.appa"><h3>Appendix A. Review protocols</h3><p id="niceng195er10.appa.et1"><a href="/books/NBK604280/bin/niceng195er10-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 221K)</span></p></div><div id="niceng195er10.appb"><h3>Appendix B. Literature search strategies</h3><p id="niceng195er10.appb.et1"><a href="/books/NBK604280/bin/niceng195er10-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Literature search strategies for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 230K)</span></p></div><div id="niceng195er10.appc"><h3>Appendix C. Qualitative evidence study selection</h3><p id="niceng195er10.appc.et1"><a href="/books/NBK604280/bin/niceng195er10-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 203K)</span></p></div><div id="niceng195er10.appd"><h3>Appendix D. Evidence tables</h3><p id="niceng195er10.appd.et1"><a href="/books/NBK604280/bin/niceng195er10-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Evidence tables for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 229K)</span></p></div><div id="niceng195er10.appe"><h3>Appendix E. Forest plots</h3><div id="niceng195er10.appe.s1"><h4>Forest plots for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng195er10.appf"><h3>Appendix F. GRADE-CERQual tables</h3><p id="niceng195er10.appf.et1"><a href="/books/NBK604280/bin/niceng195er10-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">GRADE tables for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 225K)</span></p></div><div id="niceng195er10.appg"><h3>Appendix G. Economic evidence study selection</h3><p id="niceng195er10.appg.et1"><a href="/books/NBK604280/bin/niceng195er10-appg-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</a><span class="small"> (PDF, 104K)</span></p></div><div id="niceng195er10.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng195er10.apph.s1"><h4>Economic evidence tables for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng195er10.appi"><h3>Appendix I. Economic model</h3><div id="niceng195er10.appi.s1"><h4>Economic model for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng195er10.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng195er10.appj.s1"><h4>Excluded studies for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</h4></div><div id="niceng195er10.appj.s2"><h4>Excluded qualitative studies</h4><p>The excluded studies table only lists the studies that were considered and then excluded at the full-text stage for this review (N=11) and not studies (N=57) that were considered and then excluded from the search at the full-text stage as per the PRISMA diagram in <a href="#niceng195er10.appc">Appendix C</a> for the other review questions in the same search.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng195er10appjtab1"><a href="/books/NBK604280/table/niceng195er10.appj.tab1/?report=objectonly" target="object" title="Table 11" class="img_link icnblk_img" rid-ob="figobniceng195er10appjtab1"><img class="small-thumb" src="/corehtml/pmc/css/bookshelf/2.26/img/table-icon.gif" alt="Table Icon" /></a><div class="icnblk_cntnt"><h4 id="niceng195er10.appj.tab1"><a href="/books/NBK604280/table/niceng195er10.appj.tab1/?report=objectonly" target="object" rid-ob="figobniceng195er10appjtab1">Table 11</a></h4><p class="float-caption no_bottom_margin">Excluded studies and reasons for their exclusion. </p></div></div></div><div id="niceng195er10.appj.s3"><h4>Excluded economic studies</h4><p>No studies were identified which were applicable to this review question.</p></div></div><div id="niceng195er10.appk"><h3>Appendix K. Research recommendations – full details</h3><div id="niceng195er10.appk.s1"><h4>Research recommendations for review question: What information is valued by patients with confirmed bacterial meningitis or meningococcal disease, and their families or carers?</h4><p>No research recommendation was made for this review.</p></div></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><div class="title">Update information</div><p><b>March 2024:</b> This evidence review was originally produced for the NICE guideline on bacterial meningitis and meningococcal disease. This guideline made new recommendations for newborn babies with meningitis. We have moved these recommendations into the neonatal infection guideline, so that all the recommendations for newborn babies are in one place. See the NICE website for the <a href="http://www.nice.org.uk/guidance/ng195/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">guideline recommendations</a>.</p></div><div><p>Evidence review underpinning recommendations 1.1.12, 1.1.13, 1.14.3, 1.14.19 and 1.14.20 in the NICE guideline</p><p>This evidence review was developed by NICE</p></div><div><p><b>Disclaimer</b>: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.</p><p>Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.</p><p>NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the <a href="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 2024.</div><div class="small"><span class="label">Bookshelf ID: NBK604280</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/38870336" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">38870336</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng195er10tab1"><div id="niceng195er10.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol (PPC table)</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK604280/table/niceng195er10.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng195er10.tab1_lrgtbl__"><table class="no_bottom_margin"><tbody><tr><th id="hd_b_niceng195er10.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng195er10.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>People with confirmed bacterial meningitis or meningococcal disease.</div></li><li class="half_rhythm"><div>Parents or carers of babies, children, and young people with confirmed bacterial meningitis or meningococcal disease.</div></li><li class="half_rhythm"><div>Families or carers of adults with confirmed bacterial meningitis or meningococcal disease.</div></li></ul></td></tr><tr><th id="hd_b_niceng195er10.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Phenomenon of interest</th><td headers="hd_b_niceng195er10.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Views and experiences of the information provided when bacterial meningitis and/or meningococcal disease is confirmed.</p>
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<p>Themes will be identified from the literature. The committee identified the following potential themes (however, not all of these themes may be found in the literature, and additional themes may be identified):
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<ul><li class="half_rhythm"><div>Information content (including prognosis)</div></li><li class="half_rhythm"><div>Information format</div></li><li class="half_rhythm"><div>Information sources</div></li><li class="half_rhythm"><div>Decision making</div></li><li class="half_rhythm"><div>Timing of information provision</div></li><li class="half_rhythm"><div>Information about follow-up</div></li><li class="half_rhythm"><div>Language</div></li><li class="half_rhythm"><div>Communication</div></li></ul></p>
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</td></tr><tr><th id="hd_b_niceng195er10.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng195er10.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Studies sought will be those published in the English language from OECD high income European countries, Australia, Canada and New Zealand, from 2000 until the date the searches are run.</p>
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<p>The search cut-off date of 2000 was selected as microbiology has not changed much since 2000 and most relevant interventions were available by then. Including studies prior to this may not capture experiences reflective of current practice.</p>
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</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">OECD: Organisation for Economic Co-operation and Development</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng195er10tab2"><div id="niceng195er10.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/NBK604280/table/niceng195er10.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng195er10.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng195er10.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng195er10.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng195er10.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng195er10.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Themes applied after thematic synthesis</th></tr></thead><tbody><tr><td headers="hd_h_niceng195er10.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="#niceng195er10.s1.ref1" rid="niceng195er10.s1.ref1">Clark 2013</a>
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</p>
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<p>Grounded theory</p>
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<p>UK & Ireland</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=194;</p>
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<p>n=18 invited for interview</p>
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<p>Parent/legal guardian of children who survived meningitis and/or septicaemia.</p>
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<p>Only, those parents reporting permanent after-effects, and who had accessed aftercare and support, were invited for interview.</p>
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<p>Age of children in years at the time of illness (mean): 3.83</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Purposive sampling from Meningitis Research Foundation members in the UK & Ireland</p>
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<p><b>Data collection and analysis:</b> Semi-structured interviews (face-to-face or over the phone), analysed using the constant comparison method from grounded theory</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Information on discharge from hospital</div></li><li class="half_rhythm"><div>Communication</div></li></ul></td></tr><tr><td headers="hd_h_niceng195er10.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="#niceng195er10.s1.ref2" rid="niceng195er10.s1.ref2">Haines 2005</a>
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</p>
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<p>Phenomenological</p>
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<p>England</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=7</p>
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<p>Parents of children admitted to PICU who survived severe meningococcal disease.</p>
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<p>Age: NR</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Purposive sampling from a PICU in England</p>
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<p><b>Data collection and analysis:</b> Semi-structured interviews (face-to-face), analysed using Colaizzi’s Interpretation Process</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Information during hospitalisation</div></li><li class="half_rhythm"><div>Information sources</div></li><li class="half_rhythm"><div>Communication</div></li></ul></td></tr><tr><td headers="hd_h_niceng195er10.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="#niceng195er10.s1.ref3" rid="niceng195er10.s1.ref3">Sweeney 2013</a>
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</p>
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<p>General qualitative enquiry</p>
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<p>UK</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=244</p>
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<p>Parents/carers of survivors of serogroup B meningococcal Disease in childhood</p>
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<p>Age: NR</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Purposive sampling as part of a UK population-based study (MOSAIC)</p>
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<p><b>Data collection and analysis:</b> Structured interviews (over the phone), analysed using qualitative content analysis</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Information at diagnosis</div></li><li class="half_rhythm"><div>Information during hospitalisation</div></li><li class="half_rhythm"><div>Information on discharge from hospital</div></li><li class="half_rhythm"><div>Information format</div></li><li class="half_rhythm"><div>Communication</div></li></ul></td></tr><tr><td headers="hd_h_niceng195er10.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="#niceng195er10.s1.ref4" rid="niceng195er10.s1.ref4">Wisemantel 2018</a>
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</p>
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<p>General qualitative enquiry</p>
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<p>Australia</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>N=6</p>
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<p>Parents who had experienced a child or young person with an invasive meningococcal disease.</p>
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<p>Age: NR</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p><b>Setting:</b> Convenience sampling from a regional area of New South Wales that includes a large city, regional centres, and rural and remote areas.</p>
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<p><b>Data collection and analysis:</b> Semi-structured interviews (face-to-face), analysed using thematic analysis with inductive and deductive techniques</p>
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</td><td headers="hd_h_niceng195er10.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Information at diagnosis</div></li><li class="half_rhythm"><div>Information format</div></li><li class="half_rhythm"><div>Information sources</div></li><li class="half_rhythm"><div>Communication</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">MOSAIC: Meningococcal outcomes in adolescents and in children; NR: not reported; PICU: paediatric intensive care unit</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng195er10fig1"><div id="niceng195er10.fig1" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%201.%20Theme%20map.&p=BOOKS&id=604280_niceng195er10f1.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img data-src="/books/NBK604280/bin/niceng195er10f1.jpg" alt="Figure 1. Theme map." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 1</span><span class="title">Theme map</span></h3><div class="caption"><p>BM: Bacterial Meningitis; MD: Meningococcal disease</p><p>++ = high quality evidence; + = moderate quality evidence; - = low quality evidence</p></div></div></article><article data-type="table-wrap" id="figobniceng195er10appjtab1"><div id="niceng195er10.appj.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/NBK604280/table/niceng195er10.appj.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng195er10.appj.tab1_lrgtbl__"><table><thead><tr><th id="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Code [Reason]</th></tr></thead><tbody><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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(2018) Raising awareness of the signs and symptoms, and ensuring early diagnosis and treatment of meningococcal disease.
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</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study design not of interest for review</p>
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<p>Overview of research and other activities by meningitis patient groups. No qualitative data presented</p>
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</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Carter, B, Roland, D, Bray, L
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et al. (2020) A systematic review of the organizational, environmental, professional and child and family factors influencing the timing of admission to hospital for children with serious infectious illness. 15(7): e0236013 [<a href="/pmc/articles/PMC7377491/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC7377491</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/32702034" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32702034</span></a>]
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</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study design not of interest for review</p>
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<p>A systematic review study; individual included studies have been assessed and none meet the inclusion criteria</p>
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</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Davie, S; Glennie, L; Rowland, K. (2012) Towards a meningitis free world-Can we eliminate meningococcal meningitis?. Contribution of the meningitis patient groups. Vaccine
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30(suppl2): B98–B105
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[<a href="https://pubmed.ncbi.nlm.nih.gov/22607905" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22607905</span></a>]
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</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study design not of interest for review</p>
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<p>Overview of research and other activities by meningitis patient groups. No qualitative data presented</p>
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</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Duramaz, B. B, Kihtir, H. S, Petmezci, M. T
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et al. (2020) Analysis of meningitis cases in pediatric intensive care unit: 8-year single center experience. Medical Journal of Bakirkoy
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16(1): 26–32
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</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study design not of interest for review</p>
|
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<p>Quantitative study</p>
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</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Perez, S. L, Paterniti, D. A, Wilson, M
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et al. (2015) Characterizing the Processes for Navigating Internet Health Information Using Real-Time Observations: A Mixed-Methods Approach. Journal of Medical Internet Research
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17(7): e173
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[<a href="/pmc/articles/PMC4527005/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4527005</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26194787" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26194787</span></a>]
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</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Population not of interest for review</p>
|
|
<p>Participants did not have suspected BM or MD but responded to a fictional clinical scenario of BM</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Shevlin, Mark, Coen, Pietro G; Borg, Jennie, Booy, Robert, Viner, Russell M; Christie, Deborah, Apajasalo, Arnau Aspesberro Baraff Beck Bellamy Borg Bowling Chin Christie de Winter Deyo Eiser Erickson Fellick Garratt Gill Guyatt Harrison Jenkinson Jenkinson Jones Joreskog Khan Krefetz Linstone Mobily Naess Nunnally Oranga Raphael Ridley Sander Starfield Steiger Viner Ware Ware (2016) Development of a health related quality of life measure for adolescents and young adults following invasive meningococcal disease. Applied Research in Quality of Life
|
|
11(3): 971–982
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Insufficient presentation of results</p>
|
|
<p>Describes using focus groups of IMD survivors to develop questionnaire, but no presentation of qualitative data</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Strifler, L, Morris, S. K, Dang, V
|
|
et al. (2014) The health burden of invasive meningococcal disease: A systematic review. Paediatrics and Child Health (Canada)
|
|
19(6): e92 [<a href="https://pubmed.ncbi.nlm.nih.gov/26501470" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26501470</span></a>]
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study design not of interest for review</p>
|
|
<p>Systematic review of quantitative studies</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Taylor-Robinson, D, Elders, K, Milton, B
|
|
et al. (2010) Students’ attitudes to the communications employed during an outbreak of meningococcal disease in a UK school: A qualitative study. Journal of Public Health
|
|
32(1): 32–37
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/19675024" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19675024</span></a>]
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not of interest for review</p>
|
|
<p>None of the respondents had suspected or confirmed meningitis or IMD</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
van Elsland, S. L, Springer, P, Steenhuis, I. H
|
|
et al. (2012) Tuberculous meningitis: barriers to adherence in home treatment of children and caretaker perceptions. Journal of Tropical Pediatrics
|
|
58(4): 275–9
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/22141110" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22141110</span></a>]
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Not a high-income OECD country</p>
|
|
<p>Study set in South Africa</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Vermunt, L. C, Buysse, C. M, Joosten, K. F
|
|
et al. (2011) Survivors of septic shock caused by Neisseria meningitidis in childhood: Psychosocial outcomes in young adulthood. Pediatric Critical Care Medicine
|
|
12(6): e302–e309
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/21499180" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21499180</span></a>]
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Insufficient presentation of results</p>
|
|
<p>No thematic analysis conducted. Responses to free-text questions and focus groups presented as quantitative outcomes</p>
|
|
</td></tr><tr><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Williams, C. N, Eriksson, C, Piantino, J
|
|
et al. (2018) Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective. Journal of Pediatric Intensive Care
|
|
7(4): 173–181
|
|
[<a href="/pmc/articles/PMC6506677/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6506677</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/31073491" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31073491</span></a>]
|
|
</td><td headers="hd_h_niceng195er10.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Population not of interest for review</p>
|
|
<p>Parents of children admitted to neurocritical care. Only 22% admitted for meningitis or encephalitis (67% admitted for TBI, 22% admitted for stroke). Results not presented or analysed separately for target population</p>
|
|
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