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April 25, 2026Endocrine Connections0 citationsOpen Access

Factors affecting the quality of life of adults living with Congenital Adrenal Hyperplasia: A qualitative study of lived experience

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KJK Lynette JamesCardiff and Vale University Health BoardNPN. PARKINCardiff UniversitySESue ElfordLiving Streets

Key Points

  • This study aims to explore the diverse factors influencing health-related quality of life (HRQoL) in adults with congenital adrenal hyperplasia (CAH).
  • Qualitative study design
  • Focus on lived experiences of adults with CAH
  • Identified factors impacting HRQoL
  • Highlighted domains affecting HRQoL that are not covered by current measures
  • Emphasized the need for a disease-specific HRQoL measure
  • Suggested potential for improved patient-centred care and outcomes

Abstract

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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Cite This Study

James et al. (2026) studied this question.

synapsesocial.com/papers/69ec5a8888ba6daa22dac1c4https://doi.org/10.1530/ec-26-0033
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