ArticleClinical endocrinology2022
The impact of adherence and therapy regimens on quality of life in patients with congenital adrenal hyperplasia.
Article in Clinical endocrinology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 18 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
- Factors affecting the quality of life of adults living with congenital adrenal hyperplasia: a qualitative study of lived experience.Endocrine connections · 2026Article
- Sex differences in classic congenital adrenal hyperplasia: a multicenter, real-world analysis.Frontiers in 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
- An urgent need for early diagnosis and universal health care: insights from a series of interviews with parents of children living with congenital adrenal hyperplasia in Indonesia.Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric Endocrinology · 2025Article
- Clinical Manifestations and Challenges in Adolescent and Adult Females With Classic Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency.The Journal of clinical endocrinology and metabolism · 2025Review
- 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
- Endothelial dysfunction in congenital adrenal hyperplasia due to 21-hydroxylase deficiency: current knowledge and novel biomarkers.Frontiers in endocrinology · 2025Review
- Temporal Trends in Acute Adrenal Insufficiency Events in Children With Congenital Adrenal Hyperplasia During 2019-2022.Journal of the Endocrine Society · 2024Article
- Exploratory factor analysis of the Illness Intrusiveness Rating Scale for parents of children with atypical genital appearance due to differences of sex development (DSD).Journal of pediatric psychology · 2024Article
- Health status of children and young persons with congenital adrenal hyperplasia in the UK (CAH-UK): a cross-sectional multi-centre study.European journal of endocrinology · 2022Article
- The impact of adherence and therapy regimens on quality of life in patients with congenital adrenal hyperplasia.Clinical endocrinology · 2022Article
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveVarying outcomes regarding the quality of life (QoL) have been reported in patients with congenital adrenal hyperplasia (CAH). To assess the impact of adherence rate to medical therapy regimens on QoL in patients with CAH. PATIENTS: Adolescents and adults aged 15-72 years with CAH due to 21-hydroxylase deficiency at Karolinska University Hospital, Stockholm, Sweden. MEASUREMENTS: QoL was assessed using the Addison QoL (n = 72) and RAND 36 questionnaires (n = 75). Adherence to therapy regimens was measured using the Adherence Starts with Knowledge questionnaire (ASK-12). Associations between QoL, type of glucocorticoid therapy prescribed and ASK-12 results were examined. Results were compared to reference RAND 36 data obtained from a representative sample from the general Swedish population.
resultsA good adherence rate to therapy regimens and a younger age were key factors for a better QoL in study participants with CAH. Younger patients on hydrocortisone and with good adherence had higher RAND 36 scores than older patients on prednisolone independently adherence. Participants with classic CAH (both the salt-wasting and simple virilizing form) reported higher QoL than those with nonclassic CAH. Patients with CAH, especially nonclassic, more frequently reported an impaired QoL than the general population, especially regarding limitations related to body pain, vitality and mental health.
conclusionA poor adherence rate to therapy regimens, rather than type of glucocorticoid was associated with impaired QoL in adolescents and adults with CAH.
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