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Background  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‐wasting (SW), or non‐classic (NC) CAH. The treatment regime involves life‐long glucocorticoid replacement, especially in classic phenotype.    Objectives  We aimed to assess medication adherence, endocrine knowledge and self‐management in patients with CAH and to compare patients’ and physicians’ assessments of medication adherence.    Methods  A prospective cross‐sectional study of 108 patients with CAH (52 children and 56 adults) and 45 parents/caregivers. Two adherence measures were used, a self‐reported questionnaire named Adherence Starts with Knowledge (ASK‐12) with a cut‐off level > 22 defined as poor adherence rate, and an assessment by a physician based on growth rate, 17‐hydroxyprogesterone profile, and medical history, ranked using a five‐point Likert scale.  Measurements of the patients’/parents’ knowledge and self‐management were performed using Endocrine Society Clinical Practice Guidelines.    Results  Self‐reported 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‐management 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‐reported ASK‐12 scores independent of the severity of CAH.    Conclusion  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‐management.

Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self‐management