Health-related quality of life in children and adolescents with congenital adrenal hyperplasia: a cross-sectional study using the pediatric quality of life inventory


Kocaay P., Gürbüz E., Çetin S. K., Kırgıl B. N., Tepe D., Genç C. A., ...Daha Fazla

European Journal of Pediatrics, cilt.185, sa.8, 2026 (SCI-Expanded, Scopus)

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 185 Sayı: 8
  • Basım Tarihi: 2026
  • Doi Numarası: 10.1007/s00431-026-07261-2
  • Dergi Adı: European Journal of Pediatrics
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Scopus, BIOSIS, CINAHL, EMBASE, MEDLINE, Academic Search Ultimate (EBSCO), Biomedical Reference Collection: Corporate Edition (EBSCO), Health Research Premium Collection (ProQuest)
  • Anahtar Kelimeler: Adolescents, Children, Chronic disease, Congenital adrenal hyperplasia, Pediatric endocrinology, PedsQL, Quality of life
  • Ankara Yıldırım Beyazıt Üniversitesi Adresli: Evet

Özet

Congenital adrenal hyperplasia (CAH) is a chronic endocrine disorder requiring lifelong management that may significantly impact health-related quality of life (HRQoL) in pediatric patients. Despite growing recognition of psychosocial outcomes in CAH, data from diverse populations remain limited. This cross-sectional study evaluated HRQoL in 40 children and adolescents with CAH (aged 2–18 years) followed at our pediatric endocrinology clinic, compared with 82 healthy controls. The Pediatric Quality of Life Inventory (PedsQL) was administered to assess physical, emotional, social, and school functioning domains. Clinical data including 17-hydroxyprogesterone (17-OHP), adrenocorticotropic hormone (ACTH), androstenedione levels, bone age, treatment regimens, and surgical history were collected. Statistical analyses included Mann–Whitney U test, chi-square test, and Spearman correlation. The mean age of patients with CAH was 11.85 ± 4.3 years. Based on child self-reports, total HRQoL scores were significantly lower in the CAH group compared with controls (81.69 ± 11.6 vs. 87.95 ± 6.0, p = 0.007). Emotional functioning (p = 0.001), social functioning (p = 0.039), school functioning (p = 0.048), and psychosocial health scores (p = 0.002) were also significantly lower in patients, whereas physical functioning scores were comparable between groups (p = 0.117). Parent proxy-reports similarly demonstrated significantly lower total HRQoL (p = 0.001), social functioning (p < 0.001), school functioning (p = 0.010), and psychosocial health scores (p = 0.001) in the CAH group. No significant differences were observed between child and parent assessments. Disease duration showed positive correlations with child-reported physical functioning (r = 0.402, p = 0.012), emotional functioning (r = 0.595, p < 0.001), psychosocial health (r = 0.394, p = 0.014), and total HRQoL scores (r = 0.393, p = 0.015). No consistent associations were identified between HRQoL scores and glucocorticoid dose, BMI SDS, height SDS, biochemical control, or history of surgery. Conclusions: Children and adolescents with CAH experience substantial impairments in HRQoL across all functional domains, particularly in psychosocial functioning.These findings should be interpreted with caution given the relatively small sample size of this study. Nevertheless, they suggest.Nevertheless, they suggest the need for comprehensive, multidisciplinary care approaches that address not only biochemical control but also psychological and social well-being in pediatric CAH management. (Table presented.)