ArticleClinical endocrinology2021
Assessment of medication adherence in children and adults with congenital adrenal hyperplasia and the impact of knowledge and self-management.
Article in Clinical endocrinology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed, 11 citations in OpenAlex.
- Gender Dysphoria Among 46,XX Patients Diagnosed with Congenital Adrenal Hyperplasia in Childhood: A Case Series.Journal of clinical psychology in medical settings · 2026Article
- Challenges in Sex Assignment in 46,XX Congenital Adrenal Hyperplasia due to 21-hydroxylase Deficiency and 11β-hydroxylase Deficiency in Developing Countries: Insights from an Expert Center in IndonesiaJournal of clinical research in pediatric endocrinology · 2026Article
- Evaluating Treatment Adherence in Children and Adolescents with Type 1 Diabetes: The Impact of the Adherence Starts with Knowledge-12 Score on Metabolic Control.Children (Basel, Switzerland) · 2025Article
- Challenges in Adolescent and Adult Males With Classic Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency.The Journal of clinical endocrinology and metabolism · 2025Review
- Cardiometabolic Aspects of Congenital Adrenal Hyperplasia.Endocrine reviews · 2025Review
- Assessing treatment adherence is crucial to determine adequacy of mineralocorticoid therapy.Endocrine connections · 2023Article
- The impact of adherence and therapy regimens on quality of life in patients with congenital adrenal hyperplasia.Clinical endocrinology · 2022Article
- Increased Prevalence of Fractures in Congenital Adrenal Hyperplasia: A Swedish Population-based National Cohort Study.The Journal of clinical endocrinology and metabolism · 2022Article
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundCongenital 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.
objectivesWe aimed to assess medication adherence, endocrine knowledge and self-management in patients with CAH and to compare patients' and physicians' assessments of medication adherence.
methodsA 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.
resultsSelf-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.
conclusionPatients 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.
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