Health-related quality of life and fatigue perception in children with congenital adrenal hyperplasia: A Developing nation perspective

INTRODUCTION: Disease chronicity, lifelong medications, Adrenal crisis, and genital surgeries affect the physical, mental, school and social aspects of a child’s life and are a cause of great concern to parents regarding the future of their child with Congenital Adrenal Hyperplasia (CAH). The aim of the study was to assess quality of life (QoL) in children and parents of CAH and comparison with healthy children. MATERIAL AND METHODS: This was a questionnaire-based cross-sectional study in 28 children with classical CAH attending the Pediatric Endocrine clinic at a tertiary-care center in northern India. RESULTS: CAH children had poorer QoL in School domain (73.6 vs. 90.0; p = 0.034) and significantly lower scores than their healthy peers in General (83.1 vs. 91.7, p = 0.025), Sleep (74.4 vs. 84.2, p = 0.017) domains and total score (80.0 vs. 87.8, p = 0.008) of the Fatigue scale. Parents reported Social (72.4 vs. 84.5; p = 0.009), School (63.8 vs. 90.0; p 0.01) and Total (74.3 vs. 84.2; p = 0.024) QoL were scores significantly lower than parents of healthy children. Parents perceived scores of Fatigue scale were significantly worse in all domains when compared to parents of healthy children. Failure to thrive was found to be a significant risk factor for impaired school (r = –0.533; p = 0.013) and overall (r = –0.563; p = 0.008) QoL as perceived by the child. CONCLUSIONS: Children and parents have different perception of QoL for their child. Routine periodic QoL assessment will help in better understanding of child and parent’s hidden concerns which remain unaddressed in busy clinical practice.