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Health-Related Quality of Life in Children with Congenital Adrenal Hyperplasia

Mabel Yau, Maria Vogiatzi, Ariana Lewkowitz-Shpuntoff, Saroj Nimkarn, Karen Lin-Su
Hormone Research in Pædiatrics 2015, 84 (3): 165-71

BACKGROUND/AIMS: Factors in congenital adrenal hyperplasia (CAH) that may affect quality of life (QOL) include the need for lifelong medication, the risk of adrenal crisis, and hyperandrogenic symptoms. The objectives were to evaluate health-related QOL (HRQOL) in children with CAH, and whether CAH poses an additional burden compared to other endocrine disorders.

METHODS: The validated PedsQL 4.0 generic core scales were administered to subjects (8-18 years) with CAH and hypothyroidism and their parents. The minimal clinically important difference (MCID) was determined for each scale score, allowing a comparison with the healthy population. A score of >1 standard deviation below the population mean was considered at risk for impaired HRQOL.

RESULTS: In CAH, the mean total HRQOL scores were >1 MCID below the population mean, and a higher percentage than expected had scores considered at risk.

CONCLUSION: Compared to subjects with hypothyroidism, subjects with CAH self-reported lower school domain scores. CAH subjects more frequently reported peers not wanting to be friends.

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