{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T16:24:39Z","timestamp":1790267079104,"version":"4.1.0"},"reference-count":35,"publisher":"The Endocrine Society","issue":"3","license":[{"start":{"date-parts":[[2020,9,29]],"date-time":"2020-09-29T00:00:00Z","timestamp":1601337600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"Ventus Charitable Foundation"},{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23DK121888"],"award-info":[{"award-number":["K23DK121888"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,3,8]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Context<\/jats:title>\n                    <jats:p>Current evidence on determinants of adverse health outcomes in patients with adrenal insufficiency (AI) is scarce, especially in regards to AI subtypes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To determine predictors of adverse outcomes in different subtypes of AI.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design and Setting<\/jats:title>\n                    <jats:p>Cross-sectional survey study at 2 tertiary centers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>A total of 696 patients with AI: primary AI (PAI, 42%), secondary AI (SAI, 32%), and glucocorticoid-induced AI (GIAI, 26%).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Intervention<\/jats:title>\n                    <jats:p>Patient-centered questionnaire.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main Outcome Measures<\/jats:title>\n                    <jats:p>Patients\u2019 knowledge, self-management of AI, self-perceived health, and adverse outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The incidence rate of adrenal crisis was 24\/100 patient-years with 44% experiencing at least 1 adrenal crisis since diagnosis (59% in PAI vs 31% in SAI vs 37% in GIAI, P &amp;lt; .0001). All patients described high degrees of discomfort with self-management and receiving prompt treatment. Patients with PAI were most likely to develop adrenal crises (adjusted OR 2.8, 95% CI 1.9-4.0) despite reporting better self-perceived health (adjusted OR 3.3, 95% CI 2.1-5.3), understanding of their diagnosis (89% vs 74-81% in other subtypes, P = .002), higher comfort with self-management (62% vs 52-61% in other sub types, P = .005), and higher likelihood to receive prompt treatment for adrenal crises in the emergency department (42% vs 19-30% in other subtypes, P &amp;lt; .0001).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Patients with AI reported high degrees of discomfort with self-management and treatment delays when presenting with adrenal crises. Despite better self-perceived health and understanding of diagnosis, patients with PAI experienced the highest frequency of adrenal crises. A multidimensional educational effort is needed for patients and providers to improve the outcomes of all subtypes of AI.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1210\/clinem\/dgaa668","type":"journal-article","created":{"date-parts":[[2020,9,29]],"date-time":"2020-09-29T19:47:01Z","timestamp":1601408821000},"page":"e1408-e1419","source":"Crossref","is-referenced-by-count":40,"title":["Determinants of Self-reported Health Outcomes in Adrenal Insufficiency: A Multisite Survey Study"],"prefix":"10.1210","volume":"106","author":[{"given":"Dingfeng","family":"Li","sequence":"first","affiliation":[{"name":"Division of Endocrinology, Diabetes, Metabolism and Nutrition, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natalia","family":"Genere","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, Diabetes, Metabolism and Nutrition, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"Behnken","sequence":"additional","affiliation":[{"name":"Knowledge and Evaluation Research (KER) Unit, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Majlinda","family":"Xhikola","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, University of Florida and Malcom Randall VA Medical Center, Gainesville, Florida"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tiffany","family":"Abbondanza","sequence":"additional","affiliation":[{"name":"Center for Adrenal Disorders, Division of Endocrinology, Diabetes, and Hypertension, Brigham and Women\u2019s Hospital, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anand","family":"Vaidya","sequence":"additional","affiliation":[{"name":"Center for Adrenal Disorders, Division of Endocrinology, Diabetes, and Hypertension, Brigham and Women\u2019s Hospital, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9332-2524","authenticated-orcid":false,"given":"Irina","family":"Bancos","sequence":"additional","affiliation":[{"name":"Division of Endocrinology, Diabetes, Metabolism and Nutrition, Mayo Clinic, Rochester, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"80","published-online":{"date-parts":[[2020,9,29]]},"reference":[{"issue":"3","key":"2021122117011152600_CIT0001","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1016\/S2213-8587(14)70142-1","article-title":"Diagnosis and management of adrenal insufficiency","volume":"3","author":"Bancos","year":"2015","journal-title":"Lancet Diabetes Endocrinol."},{"issue":"6","key":"2021122117011152600_CIT0002","doi-asserted-by":"crossref","first-page":"490","DOI":"10.1016\/j.ando.2017.10.010","article-title":"Group 1. Epidemiology of primary and secondary adrenal insufficiency: prevalence and incidence, acute adrenal insufficiency, long-term morbidity and mortality","volume":"78","author":"Chabre","year":"2017","journal-title":"Ann Endocrinol (Paris)."},{"issue":"1","key":"2021122117011152600_CIT0003","doi-asserted-by":"crossref","first-page":"133","DOI":"10.1016\/j.semarthrit.2016.03.001","article-title":"Systemic glucocorticoid therapy and adrenal insufficiency in adults: a systematic review","volume":"46","author":"Joseph","year":"2016","journal-title":"Semin Arthritis Rheum."},{"issue":"10","key":"2021122117011152600_CIT0004","doi-asserted-by":"crossref","first-page":"3912","DOI":"10.1210\/jc.2007-0685","article-title":"Impaired subjective health status in 256 patients with adrenal insufficiency on standard therapy based on cross-sectional analysis","volume":"92","author":"Hahner","year":"2007","journal-title":"J Clin Endocrinol Metab."},{"issue":"4","key":"2021122117011152600_CIT0005","doi-asserted-by":"crossref","first-page":"497","DOI":"10.1111\/cen.12609","article-title":"Timelines in the management of adrenal crisis \u2013 targets, limits and reality","volume":"82","author":"Hahner","year":"2015","journal-title":"Clin Endocrinol (Oxf)."},{"issue":"2","key":"2021122117011152600_CIT0006","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1210\/jc.2011-1901","article-title":"Quality of life in European patients with Addison\u2019s disease: validity of the disease-specific questionnaire AddiQoL","volume":"97","author":"\u00d8ksnes","year":"2012","journal-title":"J Clin Endocrinol Metab."},{"issue":"5","key":"2021122117011152600_CIT0007","doi-asserted-by":"crossref","first-page":"512","DOI":"10.1210\/js.2016-1064","article-title":"Health care burden in patients with adrenal insufficiency","volume":"1","author":"Gunnarsson","year":"2017","journal-title":"J Endocr Soc."},{"issue":"3","key":"2021122117011152600_CIT0008","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1111\/j.1365-2265.2009.03596.x","article-title":"Influence of hydrocortisone dosage scheme on health-related quality of life in patients with adrenal insufficiency","volume":"72","author":"Bleicken","year":"2010","journal-title":"Clin Endocrinol (Oxf)."},{"issue":"5","key":"2021122117011152600_CIT0009","doi-asserted-by":"crossref","first-page":"581","DOI":"10.1046\/j.1365-2265.2002.01466.x","article-title":"Subjective health status in Norwegian patients with Addison\u2019s disease","volume":"56","author":"L\u00f8v\u00e5s","year":"2002","journal-title":"Clin Endocrinol (Oxf)."},{"issue":"12","key":"2021122117011152600_CIT0010","doi-asserted-by":"crossref","first-page":"4882","DOI":"10.1210\/jc.2009-1368","article-title":"Clinical, immunological, and genetic features of autoimmune primary adrenal insufficiency: observations from a Norwegian registry","volume":"94","author":"Erichsen","year":"2009","journal-title":"J Clin Endocrinol Metab."},{"issue":"2","key":"2021122117011152600_CIT0011","doi-asserted-by":"crossref","first-page":"407","DOI":"10.1210\/jc.2014-3191","article-title":"High incidence of adrenal crisis in educated patients with chronic adrenal insufficiency: a prospective study","volume":"100","author":"Hahner","year":"2015","journal-title":"J Clin Endocrinol Metab."},{"issue":"3","key":"2021122117011152600_CIT0012","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1530\/EJE-09-0884","article-title":"Epidemiology of adrenal crisis in chronic adrenal insufficiency: the need for new prevention strategies","volume":"162","author":"Hahner","year":"2010","journal-title":"Eur J Endocrinol."},{"issue":"2","key":"2021122117011152600_CIT0013","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2014a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform."},{"issue":"3","key":"2021122117011152600_CIT0014","doi-asserted-by":"crossref","first-page":"402","DOI":"10.1067\/S0022-3476(03)00294-4","article-title":"Prednisolone in the treatment of adrenal insufficiency: a re-evaluation of relative potency","volume":"143","author":"Punthakee","year":"2003","journal-title":"J Pediatr."},{"issue":"2","key":"2021122117011152600_CIT0015","doi-asserted-by":"crossref","first-page":"364","DOI":"10.1210\/jc.2015-1710","article-title":"Diagnosis and treatment of primary adrenal insufficiency: an","volume":"101","author":"Bornstein","year":"2016","journal-title":"J Clin Endocrinol Metab."},{"key":"2021122117011152600_CIT0016","article-title":"Data from: determinants of self-reported health outcomes in adrenal insufficiency: a multi-site survey study","author":"Dingfeng","year":"2020"},{"issue":"2","key":"2021122117011152600_CIT0017","doi-asserted-by":"crossref","first-page":"233","DOI":"10.1530\/EJE-08-0550","article-title":"Normal overall mortality rate in Addison\u2019s disease, but young patients are at risk of premature death","volume":"160","author":"Erichsen","year":"2009","journal-title":"Eur J Endocrinol."},{"issue":"6","key":"2021122117011152600_CIT0018","doi-asserted-by":"crossref","first-page":"525","DOI":"10.1097\/MAJ.0b013e3181db6b7a","article-title":"Delayed diagnosis of adrenal insufficiency is common: a cross-sectional study in 216 patients","volume":"339","author":"Bleicken","year":"2010","journal-title":"Am J Med Sci."},{"issue":"1","key":"2021122117011152600_CIT0019","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1006\/jaut.1995.0009","article-title":"Associated autoimmunity in Addison\u2019s disease","volume":"8","author":"Zelissen","year":"1995","journal-title":"J Autoimmun."},{"issue":"793","key":"2021122117011152600_CIT0020","doi-asserted-by":"crossref","first-page":"984","DOI":"10.1136\/pgmj.67.793.984","article-title":"Association of Addison\u2019s disease with autoimmune disorders\u2013a long-term observation of 180 patients","volume":"67","author":"Kasperlik-Zaluska","year":"1991","journal-title":"Postgrad Med J."},{"issue":"6","key":"2021122117011152600_CIT0021","doi-asserted-by":"crossref","first-page":"545","DOI":"10.1111\/j.1365-2265.1992.tb02263.x","article-title":"Adrenocortical dysfunction in paracoccidioidomycosis: comparison between plasma beta-lipotrophin\/adrenocorticotrophin levels and adrenocortical tests","volume":"36","author":"Moreira","year":"1992","journal-title":"Clin Endocrinol (Oxf)."},{"issue":"5","key":"2021122117011152600_CIT0022","doi-asserted-by":"crossref","first-page":"752","DOI":"10.1007\/s11102-015-0636-7","article-title":"Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies","volume":"18","author":"Andela","year":"2015","journal-title":"Pituitary."},{"issue":"6","key":"2021122117011152600_CIT0023","doi-asserted-by":"crossref","first-page":"3279","DOI":"10.1210\/jc.2004-1375","article-title":"Quality of life in patients after long-term biochemical cure of Cushing\u2019s disease","volume":"90","author":"van Aken","year":"2005","journal-title":"J Clin Endocrinol Metab."},{"issue":"5","key":"2021122117011152600_CIT0024","doi-asserted-by":"crossref","first-page":"687","DOI":"10.1530\/EJE-12-0308","article-title":"Impaired quality of life in patients in long-term remission of Cushing\u2019s syndrome of both adrenal and pituitary origin: a remaining effect of long-standing hypercortisolism?","volume":"167","author":"Wagenmakers","year":"2012","journal-title":"Eur J Endocrinol."},{"issue":"1","key":"2021122117011152600_CIT0025","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1111\/cen.12865","article-title":"Incidence of adrenal crisis in patients with adrenal insufficiency","volume":"84","author":"Smans","year":"2016","journal-title":"Clin Endocrinol (Oxf)."},{"issue":"3","key":"2021122117011152600_CIT0026","doi-asserted-by":"crossref","first-page":"164","DOI":"10.1016\/j.ando.2018.04.015","article-title":"Acute adrenal crisis and mortality in adrenal insufficiency: Still a concern in 2018!","volume":"79","author":"Hahner","year":"2018","journal-title":"Ann Endocrinol (Paris)."},{"issue":"2","key":"2021122117011152600_CIT0027","doi-asserted-by":"crossref","first-page":"355","DOI":"10.1007\/s12020-017-1513-0","article-title":"Longitudinal AddiQoL scores may identify higher risk for adrenal crises in Addison\u2019s disease","volume":"60","author":"Meyer","year":"2018","journal-title":"Endocrine."},{"issue":"12","key":"2021122117011152600_CIT0028","doi-asserted-by":"crossref","first-page":"4843","DOI":"10.1210\/jc.2016-2221","article-title":"Exploring inpatient hospitalizations and morbidity in patients with adrenal insufficiency","volume":"101","author":"Stewart","year":"2016","journal-title":"J Clin Endocrinol Metab."},{"issue":"2","key":"2021122117011152600_CIT0029","doi-asserted-by":"crossref","first-page":"e54","DOI":"10.2196\/jmir.3869","article-title":"The contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care","volume":"17","author":"Kauw","year":"2015","journal-title":"J Med Internet Res."},{"issue":"1","key":"2021122117011152600_CIT0030","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1530\/EJE-12-1094","article-title":"A glucocorticoid education group meeting: an effective strategy for improving self-management to prevent adrenal crisis","volume":"169","author":"Repping-Wuts","year":"2013","journal-title":"Eur J Endocrinol."},{"key":"2021122117011152600_CIT0031","doi-asserted-by":"crossref","first-page":"i4998","DOI":"10.1136\/bmj.i4998","article-title":"Addison\u2019s forum helps to support and engage patients","volume":"354","author":"White","year":"2016","journal-title":"BMJ."},{"key":"2021122117011152600_CIT0032","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1016\/j.breast.2019.01.006","article-title":"Non-pharmacological therapies for depressive symptoms in breast cancer patients: Systematic review and meta-analysis of randomized clinical trials","volume":"44","author":"Couti\u00f1o-Escamilla","year":"2019","journal-title":"Breast."},{"key":"2021122117011152600_CIT0033","first-page":"CD012551","article-title":"Non-pharmacological interventions for treating chronic prostatitis\/chronic pelvic pain syndrome","volume":"5","author":"Franco","year":"2018","journal-title":"Cochrane Database Syst Rev."},{"key":"2021122117011152600_CIT0034","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1016\/j.foot.2017.05.004","article-title":"The effectiveness of conservative, non-pharmacological treatment, of plantar heel pain: a systematic review with meta-analysis","volume":"33","author":"Salvioli","year":"2017","journal-title":"Foot (Edinb)."},{"issue":"3","key":"2021122117011152600_CIT0035","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1111\/cen.13267","article-title":"Management of glucocorticoid replacement in adrenal insufficiency shows notable heterogeneity - data from the EU-AIR","volume":"86","author":"Murray","year":"2017","journal-title":"Clin Endocrinol (Oxf)."}],"container-title":["The Journal of Clinical Endocrinology &amp; Metabolism"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/academic.oup.com\/jcem\/advance-article-pdf\/doi\/10.1210\/clinem\/dgaa668\/33803945\/dgaa668.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jcem\/article-pdf\/106\/3\/e1408\/41832531\/dgaa668.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jcem\/article-pdf\/106\/3\/e1408\/41832531\/dgaa668.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,12,21]],"date-time":"2021-12-21T12:21:15Z","timestamp":1640089275000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jcem\/article\/106\/3\/e1408\/5913017"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,9,29]]},"references-count":35,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2020,9,29]]},"published-print":{"date-parts":[[2021,3,8]]}},"URL":"https:\/\/doi.org\/10.1210\/clinem\/dgaa668","relation":{},"ISSN":["0021-972X","1945-7197"],"issn-type":[{"value":"0021-972X","type":"print"},{"value":"1945-7197","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2021,3,1]]},"published":{"date-parts":[[2020,9,29]]}}}