WHAT…IF? Organizing a focusgroup for young adults with congenital adrenal hyperplasia who underwent feminizing surgery in childhood and/or adolescence

Van de Wynkele Lena, Tylleman Aube, 2025
Congenital adrenal hyperplasia (CAH) is a rare genetic condition. Fetuses with CAH produce too many male hormones during pregnancy, which can lead to an atypical genital development in girls. A key debate in CAH care is whether early feminizing surgery should be used to align physical characteristics more closely with typical female appearance. This research aimed to provide insight into the experiences and long-term effects of early feminizing surgery from the perspectives of patients with CAH who underwent these procedures. The focus group and individual interviews revealed that participants have mixed feelings about early surgery. While some appreciated the benefits of early interventions to avoid social stigma and preferred a genital appearance more similar to those of girls not born with CAH, others expressed a desire for autonomy and wished they could have made the decision themselves. These findings highlighted the need for care models that address both the medical and psychological well-being of patients with CAH, underscoring the importance of open communication among patients, their families and healthcare providers. This research holds value beyond the academic sphere, offering insights that can shape public health policy and clinical practices. By focusing on the perspectives of patients with CAH themselves, this study encourages a more patient-centered healthcare approach, which balances early medical decisions with long-term psychological and social needs. The findings promote awareness among healthcare providers and policymakers of the importance of bodily autonomy and holistic care, helping to bridge the gap between scientific research and practical, compassionate healthcare solutions for women with CAH.

Promotor Martine Cools
Opleiding Geneeskunde
Domein Pediatrie
Kernwoorden CAH congenital adrenal hyperplasia feminizing surgery