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insufficiency" /></a></div><div class="bkr_bib"><h1 id="_NBK609101_"><span itemprop="name">Ongoing care and monitoring of people with adrenal insufficiency</span></h1><div class="subtitle">Adrenal insufficiency: identification and management</div><p><b>Evidence review N</b></p><p><i>NICE Guideline, No. 243</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 Aug</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-6476-5</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2024.</div></div><div class="bkr_clear"></div></div><div id="niceng243er14.s1"><h2 id="_niceng243er14_s1_">1. Ongoing care and monitoring</h2><div id="niceng243er14.s1.1"><h3>1.1. Review question</h3><ul><li class="half_rhythm"><div>What ongoing care and monitoring should be offered to people with adrenal insufficiency?</div></li><li class="half_rhythm"><div>What ongoing care and monitoring should be offered to people with adrenal insufficiency who are receiving end-of-life care?</div></li></ul><div id="niceng243er14.s1.1.1"><h4>1.1.1. Introduction</h4><div id="niceng243er14.s1.1.1.1"><h5>Ongoing care and monitoring</h5><p>People with primary and secondary adrenal insufficiency need lifelong glucocorticoids, and for primary adrenal insufficiency mineralocorticoid replacement as well. People with tertiary adrenal insufficiency may be able to stop glucocorticoid replacement, but a proportion will need to continue lifelong. There are consequences of both over and under treatment with glucocorticoids and mineralocorticoids.</p><p>Signs and symptoms of glucocorticoid under-replacement include weight loss, early satiety, decreased appetite, nausea, fatigue that is significantly affecting the person’s ability to carry out activities of daily living, worsening pigmentation (in primary adrenal insufficiency), muscle weakness. Additional signs and symptoms in children and young people include faltering growth and early puberty.</p><p>Signs and symptoms of glucocorticoid over-replacement (for people who are on a higher dose than standard replacement) include weight gain, increased appetite, disturbed sleep, skin thinning, new or worsening diabetes, new or worsening hypertension, cushingoid appearance, skin infections, acne, thrush, frequent or low-impact fractures, height loss, fragility fractures.</p><p>There is variation in practice, both in frequency of ongoing monitoring of people with adrenal insufficiency, and in what tests might be performed.</p><p>The purpose of this review is to determine the optimal frequency of monitoring and what needs to be monitored for consequences of over- or under-treatment with glucocorticoids to improve outcomes for people with adrenal insufficiency,</p></div><div id="niceng243er14.s1.1.1.2"><h5>Ongoing care and monitoring for people receiving end-of-life care</h5><p>Glucocorticoids are essential for life in people with adrenal insufficiency. For people coming towards the end of their life comfort and symptom control become priorities rather than prolonging life. It can be difficult to take oral medication, or multiple doses towards end-of-life and so it may be necessary to adjust replacement regimen of glucocorticoids to once daily dosing, use of dispersible medications rather than tablets, or use of subcutaneous or intramuscular preparations. It also is not appropriate to be performing invasive monitoring and blood tests at end-of-life. Patients’ wishes should be taken into account, and they may choose to stop all medication when they are actively dying.</p><p>The purpose of this review is to determine what ongoing care and monitoring should be offered to people who are receiving end-of-life care.</p></div></div><div id="niceng243er14.s1.1.2"><h4>1.1.2. Summary of the protocol</h4><p>For full details see the review protocol in <a href="#niceng243er14.appa">Appendix A</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng243er14tab1"><a href="/books/NBK609101/table/niceng243er14.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img" rid-ob="figobniceng243er14tab1"><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="niceng243er14.tab1"><a href="/books/NBK609101/table/niceng243er14.tab1/?report=objectonly" target="object" rid-ob="figobniceng243er14tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">PICO characteristics of review question. </p></div></div></div><div id="niceng243er14.s1.1.3"><h4>1.1.3. Methods and process</h4><p>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="#niceng243er14.appa">appendix A</a> and the <a href="/books/NBK609101/bin/NG243-Methods.pdf">methods</a> document.</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="niceng243er14.s1.1.4"><h4>1.1.4. Effectiveness evidence</h4><div id="niceng243er14.s1.1.4.1"><h5>1.1.4.1. Included studies</h5><p>A search was conducted for randomised controlled trials (RCTs) and observational studies comparing monitoring strategies for people with adrenal insufficiency and people with adrenal insufficiency who are receiving end-of-life care.</p><p>No relevant RCTs or observational studies were identified.</p></div><div id="niceng243er14.s1.1.4.2"><h5>1.1.4.2. Excluded studies</h5><p>See the excluded studies list in <a href="#niceng243er14.appj">Appendix J</a>.</p></div></div><div id="niceng243er14.s1.1.5"><h4>1.1.5. Summary of studies included in the effectiveness evidence</h4><p>No relevant published evidence was identified.</p></div><div id="niceng243er14.s1.1.6"><h4>1.1.6. Economic evidence</h4><div id="niceng243er14.s1.1.6.1"><h5>1.1.6.1. Included studies</h5><p>No health economic studies were included.</p></div><div id="niceng243er14.s1.1.6.2"><h5>1.1.6.2. Excluded studies</h5><p>No relevant health economic studies were excluded due to assessment of limited applicability or methodological limitations.</p><p>See also the health economic study selection flow chart in <a href="#niceng243er14.appg">Appendix G</a>.</p></div></div><div id="niceng243er14.s1.1.7"><h4>1.1.7. Economic model</h4><p>This area was not prioritised for new cost-effectiveness analysis.</p></div></div><div id="niceng243er14.s1.2"><h3>1.2. The committee’s discussion and interpretation of the evidence</h3><div id="niceng243er14.s1.2.1"><h4>1.2.1. The outcomes that matter most</h4><p>The committee considered all outcomes listed in the protocol to be critical and of equal importance in decision-making. These outcomes included mortality, health-related quality of life, complications of AI, incidence of vascular events or fractures or diabetes and measures of activities of daily living.</p></div><div id="niceng243er14.s1.2.2"><h4>1.2.2. The quality of the evidence</h4><p>No evidence was identified for ongoing care and monitoring of people with adrenal insufficiency including those who are receiving end-of-life care. Recommendations were made by consensus of the committee to reflect current practice.</p></div><div id="niceng243er14.s1.2.3"><h4>1.2.3. Benefits and harms</h4><p>The committee agreed that it was important to make recommendations despite the lack of evidence as adrenal insufficiency is a complex condition.</p><p>The committee didn’t wish to specify the frequency of reviews as these would vary widely depending on patient needs as well as the type of adrenal insufficiency they have. For example: newly diagnosed people with primary adrenal insufficiency may require more frequent monitoring until the health care professional is satisfied that the person understands the condition and how to manage it. The committee acknowledged this should be part of shared decision-making between clinical staff and the person. People who are symptomatic and have rapidly changing clinical needs will also need more frequent monitoring until their condition has stabilised. However, people with secondary or tertiary adrenal insufficiency who are confident with self-management or have stable clinical needs may need less frequent monitoring, as this group of people will still have some residual HPA axis function and therefore be at much lower risk of having an adrenal crisis.</p><p>Health care professionals would consider the most appropriate mode of follow-up and monitoring according to the person’s needs. For example, some may need to be seen face-to-face and others may be followed up remotely through telephone consultations. A shared decision model such as Patient Initiated Follow Up (PIFU) may be used to aid discussion with the patient such as the frequency and mode of follow up.</p><p>The committee agreed the appropriate specialist team providing ongoing care should be defined based on the needs of the individual.</p><p>Health care professionals should be aware of signs and symptoms of under-replacement of glucocorticoids which may include weight loss, nausea and fatigue. These can be quite broad and non-specific; therefore, it is important to investigate whether these can be attributed to under replacement of glucocorticoids or other reasons. For example, fatigue can occur just in the short term while patients are adjusting to steroids and should not be a reason to initiate a change in dosing. However, sudden onset fatigue or fatigue that is significantly affecting the person’s ability to undertake activities of daily living should not be ignored.</p><p>Signs and symptoms indicating over-replacement of glucocorticoids particularly in patients on supraphysiological (higher than standard) doses may include unexplained weight gain, new or worsening diabetes or hypertension. Cushingoid appearance/ Cushing’s syndrome is particularly indicative of over-replacement. This usually manifests as weight gain with increased fat on the chest and tummy, but thin arms and legs with muscle wasting and reduced muscle strength, a build-up of fat on the back of the neck and shoulders, and a red, puffy, rounded face, bruising and red stretch marks particularly found with the use of dexamethasone.</p><p>Treatment for people with primary adrenal insufficiency also includes mineralocorticoids which can also cause undesirable effects if over- or under-used and need to be carefully monitored. These include light headedness or salt craving (under replacement) and swollen ankles or high blood pressure (over replacement).</p><p>The committee noted that whilst measuring renin may be beneficial to some patients, this doesn’t need to be routinely screened if there are no symptoms indicating any issues with fludrocortisone dosing. Renin levels have not been shown to correlate with symptoms.</p><p>Cortisol day series do not need to be performed routinely as the levels don’t correlate to symptoms, especially fatigue. Some people may have very low afternoon cortisol levels but will be fine. Therefore, clinicians need to be careful of interpreting low levels in this context. In addition, most of the new assays don’t correlate with the traditional thresholds that were based on the old literature. Consequently, cortisol day series values may be misleading.</p><p>An important aim of ongoing reviews is to make sure that people with adrenal insufficiency understand their condition, how to manage it and how to avoid having an adrenal crisis. Therefore, healthcare professionals should make sure that they discuss this with their patients and emphasise the importance of medication adherence and knowing what to do in emergency situations. The impact of the condition on a patient’s psychological well-being and activities of daily living should not be underestimated and should be discussed during each review.</p><div id="niceng243er14.s1.2.3.1"><h5>Children</h5><p>For children, the committee agreed appointments with the specialist team should be at least every six months, but similarly to adults, this would need to be adjusted according to patient needs. An annual face-to-face hospital appointment should be offered to measure height and weight of children to ensure the condition is being managed well. These measurements can be taken by any member of the multidisciplinary team including a specialist nurse. Progression to and through puberty for example, frequency and regularity of menstrual periods should be monitored as both over- and under-replacement of glucocorticoids can have an impact on puberty progression. The committee discussed more frequent monitoring may be needed during periods of rapid growth when dosages of medication may need to be changed when transitioning to adult services, if there are concerns with medicines adherence, or whether the child and their family or carers are able to safely manage the condition.</p><p>For people at the end of life, the committee agreed cross referring to the guidelines on end-of-life care for adults and end-of-life care for children and young people with life-limiting conditions was appropriate. Decisions on withdrawing active treatment should be made as part of shared decision-making and may not mean withdrawing steroids but may include changes to how medication is administered such as by injection rather than orally.</p></div></div><div id="niceng243er14.s1.2.4"><h4>1.2.4. Cost effectiveness and resource use</h4><p>No health economic evidence or clinical evidence was identified for this review question, therefore the committee made recommendations reflective of current practice. As the recommendations made are reflective of current practice no significant resource will be associated with this review question.</p></div><div id="niceng243er14.s1.2.5"><h4>1.2.5. Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations1.8.1 – 1.8.15.</p></div></div></div><div id="niceng243er14.rl.r1"><h2 id="_niceng243er14_rl_r1_">References</h2><dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>1.</dt><dd><div class="bk_ref" id="niceng243er14.ref1">National Institute for Health and Care Excellence. Developing NICE guidelines: the manual. London. National Institute for Health and Care Excellence, 2014. Available from: <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.nice.org<wbr style="display:inline-block"></wbr>​.uk/process/pmg20/chapter/introduction</a> [<a href="https://pubmed.ncbi.nlm.nih.gov/26677490" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26677490</span></a>]</div></dd></dl></dl></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng243er14.appa"><h3>Appendix A. Review protocols</h3><p id="niceng243er14.appa.et1"><a href="/books/NBK609101/bin/niceng243er14-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">A.1. Review protocol for ongoing care and monitoring of people with adrenal insufficiency including those receiving end-of-life care</a><span class="small"> (PDF, 197K)</span></p><p id="niceng243er14.appa.et2"><a href="/books/NBK609101/bin/niceng243er14-appa-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">A.2. Health economic review protocol</a><span class="small"> (PDF, 131K)</span></p></div><div id="niceng243er14.appb"><h3>Appendix B. Literature search strategies</h3><p>The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.<a class="bibr" href="#niceng243er14.ref1" rid="niceng243er14.ref1"><sup>1</sup></a></p><p>For more information, please see the <a href="/books/NBK609101/bin/NG243-Methods.pdf">Methodology</a> review published as part of the accompanying documents for this guideline.</p><p id="niceng243er14.appb.et1"><a href="/books/NBK609101/bin/niceng243er14-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">B.1. Clinical search literature search strategy</a><span class="small"> (PDF, 197K)</span></p><p id="niceng243er14.appb.et2"><a href="/books/NBK609101/bin/niceng243er14-appb-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">B.2. Health Economics literature search strategy</a><span class="small"> (PDF, 158K)</span></p></div><div id="niceng243er14.appc"><h3>Appendix C. Effectiveness evidence study selection</h3><p id="niceng243er14.appc.et1"><a href="/books/NBK609101/bin/niceng243er14-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 1. Flow chart of clinical study selection for the review of ongoing care and monitoring of people with adrenal insufficiency including those receiving end-of-life care</a><span class="small"> (PDF, 106K)</span></p></div><div id="niceng243er14.appd"><h3>Appendix D. Effectiveness evidence</h3><p>No evidence included.</p></div><div id="niceng243er14.appe"><h3>Appendix E. Forest plots</h3><p>None.</p></div><div id="niceng243er14.appf"><h3>Appendix F. GRADE and/or GRADE-CERQual tables</h3><p>None.</p></div><div id="niceng243er14.appg"><h3>Appendix G. Economic evidence study selection</h3><p id="niceng243er14.appg.et1"><a href="/books/NBK609101/bin/niceng243er14-appg-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (166K)</span></p></div><div id="niceng243er14.apph"><h3>Appendix H. Economic evidence tables</h3><p>None.</p></div><div id="niceng243er14.appi"><h3>Appendix I. Health economic model</h3><p>No original economic modelling was undertaken for this review question.</p></div><div id="niceng243er14.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng243er14.appj.s1"><h4>J.1. Clinical studies</h4><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng243er14appjtab1"><a href="/books/NBK609101/table/niceng243er14.appj.tab1/?report=objectonly" target="object" title="Table 5" class="img_link icnblk_img" rid-ob="figobniceng243er14appjtab1"><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="niceng243er14.appj.tab1"><a href="/books/NBK609101/table/niceng243er14.appj.tab1/?report=objectonly" target="object" rid-ob="figobniceng243er14appjtab1">Table 5</a></h4><p class="float-caption no_bottom_margin">Studies excluded from the clinical review. </p></div></div></div><div id="niceng243er14.appj.s2"><h4>J.2. Health Economic studies</h4><p>None.</p></div></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews underpinning recommendations 1.8.1 to 1.8.15 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="https://www.gov.wales/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Welsh Government</a>, <a href="http://www.scotland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Scottish Government</a>, and <a href="http://www.northernireland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Northern Ireland Executive</a>. All NICE guidance is subject to regular review and may be updated or withdrawn.</p></div><div class="half_rhythm"><a href="/books/about/copyright/">Copyright</a> © NICE 2024.</div><div class="small"><span class="label">Bookshelf ID: NBK609101</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/39541494" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">39541494</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng243er14tab1"><div id="niceng243er14.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">PICO characteristics of review question</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK609101/table/niceng243er14.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng243er14.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng243er14.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng243er14.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">People with adrenal insufficiency (primary, secondary or tertiary) including the following stratified groups:
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Adults (aged ≥16 years)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Children aged ≥5 up to 16 years</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Infants aged 1-5 years (because of more frequent dosing)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Infants aged <1 year including neonates</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Adults or children receiving end-of-life care</p></dd></dl></dl>
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Exclusion: None identified</td></tr><tr><th id="hd_b_niceng243er14.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Intervention(s)</th><td headers="hd_b_niceng243er14.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Any monitoring strategy for over/undertreatment with glucocorticoids.</p>
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<p><b>Strategies may include monitoring for:</b>
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Weight/obesity</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Electrolyte abnormalities</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Symptoms/signs for example, tiredness, abdominal or limb pain</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Blood pressure</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Osteoporosis/ bone health</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Blood glucose</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Lipids</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Pigmentation (if under treating)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">24 hour cortisol profile</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Cortisol day curve/day series</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Activities of daily living</p></dd></dl></dl>
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<b>Frequency of monitoring as a general appointment</b>
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">6 monthly</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Yearly</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Patient-initiated follow up (PIFU)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Other – as reported in the studies</p></dd></dl></dl></p>
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</td></tr><tr><th id="hd_b_niceng243er14.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Comparison(s)</th><td headers="hd_b_niceng243er14.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><b>For monitoring over/undertreatment</b>
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Monitoring for different indications compared to each other or to a suitable comparator such as no monitoring.</p></dd></dl></dl>
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<b>For frequency:</b>
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Different frequencies compared to each other</p></dd></dl></dl></td></tr><tr><th id="hd_b_niceng243er14.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Outcomes</th><td headers="hd_b_niceng243er14.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">All outcomes are considered equally important for decision making and therefore have all been rated as critical:
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<dl class="temp-labeled-list"><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Mortality</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Health-related quality of life, for example EQ-5D, SF-36</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Complications of adrenal insufficiency (For example, in primary AI: - Growth related issues in children - Low blood sugar/ hypoglycaemia - Early satiety - Complications specifically related to mineralocorticoid deficiencies: Salt wasting / hyponatraemia, Salt cravings, Dizziness Muscle cramps, Low blood pressure, Muscle weakness, Nocturia)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Incidence of adrenal crisis (as defined by authors)</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Incidence Vascular events</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Incidence of fractures</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Incidence of diabetes</p></dd></dl><dl class="bkr_refwrap"><dt>·</dt><dd><p class="no_top_margin">Activities of daily living - Social participation - Participation in education (School/university) Participation in physical activity (measured by any validated scale such as Barthel Index, the Katz Index, or the Functional Independence Measure).</p></dd></dl></dl>
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Follow up: Longest follow up reported Where different follow up periods are reported in an individual study, we will choose the one most appropriate or most commonly reported to be able to conduct a meta-analysis.</td></tr><tr><th id="hd_b_niceng243er14.tab1_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design</th><td headers="hd_b_niceng243er14.tab1_1_1_5_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Systematic reviews of RCTs and RCTs will be considered for inclusion.</p>
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<p>Cross-over trials will also be considered for inclusion regardless of washout period as it is unsafe for patients to be completely free of background medication especially glucocorticoids.</p>
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<p>If insufficient RCT evidence is available, a search for non-randomised studies will be conducted. Studies will only be considered for inclusion if they have conducted a multivariate analysis adjusting for at least age and sex.</p>
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<p>Published NMAs and IPDs will be considered for inclusion.</p>
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</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng243er14appjtab1"><div id="niceng243er14.appj.tab1" class="table"><h3><span class="label">Table 5</span><span class="title">Studies excluded from the clinical review</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK609101/table/niceng243er14.appj.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng243er14.appj.tab1_lrgtbl__"><table><thead><tr><th id="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng243er14.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_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Appan, S; Hindmarsh, P C; Brook, C G (1989) Monitoring treatment in congenital adrenal hyperplasia. Archives of disease in childhood
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64(9): 1235–9
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[<a href="/pmc/articles/PMC1792744/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC1792744</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/2640553" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 2640553</span></a>]
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</td><td headers="hd_h_niceng243er14.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 relevant to this review protocol</p>
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<p>
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<i>Non comparative cohort study</i>
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</p>
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Birkebaek, Niels H; Hougaard, David M; Cohen, Arieh S (2017) Monitoring steroid replacement therapy in children with congenital adrenal hyperplasia. Journal of pediatric endocrinology & metabolism : JPEM
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30(1): 85–88
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[<a href="https://pubmed.ncbi.nlm.nih.gov/27977405" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27977405</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study does not address our clinical question</p>
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<p>
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<i>Comparison of 17-OHP by radio immunoassay in serum with analysis by liquid chromatography tandem mass spectrometry</i>
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</p>
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Dauber, Andrew; Kellogg, Mark; Majzoub, Joseph A (2010) Monitoring of therapy in congenital adrenal hyperplasia. Clinical chemistry
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56(8): 1245–51
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[<a href="https://pubmed.ncbi.nlm.nih.gov/20558634" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20558634</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Review article but not a systematic review</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Deutschbein, T., Unger, N., Hauffa, B.P.
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et al. (2011) Monitoring medical treatment in adolescents and young adults with congenital adrenal hyperplasia: Utility of salivary 17alpha-hydroxyprogesterone day profiles. Experimental and Clinical Endocrinology and Diabetes
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119(3): 131–138
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[<a href="https://pubmed.ncbi.nlm.nih.gov/20690075" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20690075</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study does not address our clinical question</p>
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<p>
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<i>Looking at diagnostic validity of 17OPH sampling</i>
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</p>
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Donatti, T.L., Koch, V.H.K., Takayama, L.
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et al. (2011) Effects of glucocorticoids on growth and bone mineralization. Jornal de Pediatria
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87(1): 4–12
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[<a href="https://pubmed.ncbi.nlm.nih.gov/21234507" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 21234507</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Study not reported in English</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Eugster, E A, Dimeglio, L A, Wright, J C
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et al. (2001) Height outcome in congenital adrenal hyperplasia caused by 21-hydroxylase deficiency: a meta-analysis. The Journal of pediatrics
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138(1): 26–32
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[<a href="https://pubmed.ncbi.nlm.nih.gov/11148508" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 11148508</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<p>- Study does not address our clinical question</p>
|
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<p>
|
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<i>Retrospective chart review of final and target heights. Assessed impact of sex, time of diagnosis and compliance.</i>
|
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</p>
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Fleming, Louise; Van Riper, Marcia; Knafl, Kathleen (2017) Management of Childhood Congenital Adrenal Hyperplasia-An Integrative Review of the Literature. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
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31(5): 560–577
|
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[<a href="/pmc/articles/PMC5654644/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5654644</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28416079" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28416079</span></a>]
|
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Study does not contain an intervention relevant to this review protocol</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Gomes, Larissa G; Mendonca, Berenice B; Bachega, Tania A S S (2020) Long-term cardio-metabolic outcomes in patients with classical congenital adrenal hyperplasia: is the risk real?. Current opinion in endocrinology, diabetes, and obesity
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27(3): 155–161
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[<a href="https://pubmed.ncbi.nlm.nih.gov/32304389" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32304389</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Study does not address our clinical question</p>
|
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<p><i>Review of the frequency of metabolic syndrome components and other cardiovascular risk factors in CAH</i>.</p>
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Grossman, Ashley B (2010) Clinical Review#: The diagnosis and management of central hypoadrenalism. The Journal of clinical endocrinology and metabolism
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95(11): 4855–63
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[<a href="https://pubmed.ncbi.nlm.nih.gov/20719838" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20719838</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>- Systematic review used as source of primary studies</p>
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<p>
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<i>Addresses management and diagnosis but not monitoring.</i>
|
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</p>
|
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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Hummel, Silvia R, Sadler, Susannah, Whitaker, Martin J
|
|
et al. (2016) A model for measuring the health burden of classic congenital adrenal hyperplasia in adults. Clinical endocrinology
|
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85(3): 361–98
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/26991412" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26991412</span></a>]
|
|
</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Study does not address our clinical question</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Jodar, Esteban, Valdepenas, Maria Pilar Ruiz, Martinez, Guillermo
|
|
et al. (2003) Long-term follow-up of bone mineral density in Addison’s disease. Clinical endocrinology
|
|
58(5): 617–20
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/12699444" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12699444</span></a>]
|
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study does not address our clinical question</p>
|
|
<p>
|
|
<i>Looks at long-term follow up but no monitoring strategy</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Kim, Mimi S; Ryabets-Lienhard, Anna; Geffner, Mitchell E (2012) Management of congenital adrenal hyperplasia in childhood. Current opinion in endocrinology, diabetes, and obesity
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19(6): 483–8
|
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[<a href="/pmc/articles/PMC3584711/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3584711</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23037928" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23037928</span></a>]
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Systematic review used as source of primary studies</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Lim, Seung Gyun, Lee, Young Ah, Jang, Han Na
|
|
et al. (2021) Long-Term Health Outcomes of Korean Adults With Classic Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency. Frontiers in endocrinology
|
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12: 761258
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[<a href="/pmc/articles/PMC8547732/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8547732</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/34712205" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 34712205</span></a>]
|
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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<p>- Study does not address our clinical question</p>
|
|
<p>
|
|
<i>Looking at long term health outcomes. No monitoring strategy.</i>
|
|
</p>
|
|
</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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Mah, Peak M, Jenkins, Richard C, Rostami-Hodjegan, Amin
|
|
et al. (2004) Weight-related dosing, timing and monitoring hydrocortisone replacement therapy in patients with adrenal insufficiency. Clinical endocrinology
|
|
61(3): 367–75
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/15355454" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15355454</span></a>]
|
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>- Study does not address our clinical question</p>
|
|
<p>
|
|
<i>The objective of this study was to examine the variables determining hydrocortisone (HC) disposition in patients with adrenal insufficiency by comparing fixed vs ‘body surface area-adjusted’ dose in different states (fasted vs fed)</i>
|
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</p>
|
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</td></tr><tr><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mallappa, A., Daley, L.-A., Van Ryzin, C.
|
|
et al. (2013) Timing is everything: Hormonal evaluation of patients with congenital adrenal hyperplasia. Endocrine Reviews
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34(3suppl1)
|
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</td><td headers="hd_h_niceng243er14.appj.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_niceng243er14.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
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Wieacker, Isabelle, Peter, Michael, Borucki, Katrin
|
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et al. (2015) Therapy monitoring in congenital adrenal hyperplasia by dried blood samples. Journal of pediatric endocrinology & metabolism : JPEM
|
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28(78): 867–71
|
|
[<a href="https://pubmed.ncbi.nlm.nih.gov/25781526" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25781526</span></a>]
|
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</td><td headers="hd_h_niceng243er14.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">- Study does not contain an intervention relevant to this review protocol</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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