{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T18:38:24Z","timestamp":1790879904472,"version":"4.1.0"},"reference-count":37,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2021,1,3]],"date-time":"2021-01-03T00:00:00Z","timestamp":1609632000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Clinical Endocrinology"],"published-print":{"date-parts":[[2021,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Congenital adrenal hyperplasia (CAH) is caused by a deficiency of one of the enzymes required for cortisol biosynthesis. The disease is classified as either classic (severe phenotype), subdivided into simple virilizing (SV) and salt\u2010wasting (SW), or non\u2010classic (NC) CAH. The treatment regime involves life\u2010long glucocorticoid replacement, especially in classic phenotype.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>We aimed to assess medication adherence, endocrine knowledge and self\u2010management in patients with CAH and to compare patients\u2019 and physicians\u2019 assessments of medication adherence.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A prospective cross\u2010sectional study of 108 patients with CAH (52 children and 56 adults) and 45 parents\/caregivers. Two adherence measures were used, a self\u2010reported questionnaire named Adherence Starts with Knowledge (ASK\u201012) with a cut\u2010off level\u00a0&gt;\u00a022 defined as poor adherence rate, and an assessment by a physician based on growth rate, 17\u2010hydroxyprogesterone profile, and medical history, ranked using a five\u2010point Likert scale.<\/jats:p><jats:p>Measurements of the patients\u2019\/parents\u2019 knowledge and self\u2010management were performed using Endocrine Society Clinical Practice Guidelines.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Self\u2010reported medication adherence was good with 74% of the participants reported good adherence with higher adherence in patients with the SW form. The highest endocrine knowledge and self\u2010management were found in parents compared with children and adults with classic CAH. There was 30% discordance between the assessments by a physician and the self\u2010reported ASK\u201012 scores independent of the severity of CAH.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Patients and endocrinologists reported high medication adherence, however, discordance was found in 30% of the studied patients. Patients with the more severe form of CAH had higher adherence rates and demonstrated good endocrine knowledge\/self\u2010management.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cen.14398","type":"journal-article","created":{"date-parts":[[2020,12,21]],"date-time":"2020-12-21T22:53:04Z","timestamp":1608591184000},"page":"753-764","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self\u2010management"],"prefix":"10.1111","volume":"94","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8935-0098","authenticated-orcid":false,"given":"Kerstin","family":"Ekbom","sequence":"first","affiliation":[{"name":"Department of Women\u2019s and Children\u2019s Health Karolinska Institutet Stockholm Sweden"},{"name":"Department of Paediatric Endocrinology Astrid Lindgren Children Hospital Karolinska University Hospital Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Strandqvist","sequence":"additional","affiliation":[{"name":"Department of Women\u2019s and Children\u2019s Health Karolinska Institutet Stockholm Sweden"},{"name":"Division of Psychology Department of Clinical Neuroscience Karolinska Institutet Stocholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4398-0948","authenticated-orcid":false,"given":"Svetlana","family":"Lajic","sequence":"additional","affiliation":[{"name":"Department of Women\u2019s and Children\u2019s Health Karolinska Institutet Stockholm Sweden"},{"name":"Department of Paediatric Endocrinology Astrid Lindgren Children Hospital Karolinska University Hospital Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelica L","family":"Hirschberg","sequence":"additional","affiliation":[{"name":"Department of Gynecology and Reproductive Medicine Karolinska University Hospital Stockholm Sweden"},{"name":"Department of Endocrinology, Metabolism and Diabetes Karolinska University Hospital Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5622-6987","authenticated-orcid":false,"given":"Henrik","family":"Falhammar","sequence":"additional","affiliation":[{"name":"Department of Endocrinology, Metabolism and Diabetes Karolinska University Hospital Stockholm Sweden"},{"name":"Department of Molecular Medicine and Surgery Karolinska Institutet Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0405-3401","authenticated-orcid":false,"given":"Anna","family":"Nordenstr\u00f6m","sequence":"additional","affiliation":[{"name":"Department of Women\u2019s and Children\u2019s Health Karolinska Institutet Stockholm Sweden"},{"name":"Department of Paediatric Endocrinology Astrid Lindgren Children Hospital Karolinska University Hospital Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,1,3]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)31431-9"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2010-0917"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-8587(13)70007-X"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-18-0712"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12020-011-9591-x"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2018-01865"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1210\/jc.2014-2957"},{"issue":"3","key":"e_1_2_10_9_1","first-page":"466","article-title":"Health status in 1040 adults with disorders of sex development (DSD): a European multicenter study. 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