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Qualitative study identifies factors affecting health-related quality of life in adults with congenital adrenal hyperplasia, suggesting a need for better measures.
This study identified a breadth of factors impacting HRQoL in CAH - domains overlooked by an existing measure which predominantly focus on physical symptoms. Further work is needed to develop a sensitive, comprehensive disease-specific HRQoL measure which reflects the lived experience of individuals with CAH to facilitate delivery of patient-centred care and improved patient outcomes.
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James et al. (2026) studied this question.
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