Impact of transition on quality of life in patients with congenital adrenal hyperplasia diagnosed during childhood

Endocr Connect. 2017 Aug 9;6(7):422-429. doi: 10.1530/EC-17-0094. Print 2017 Oct.


Background: Health-related quality of life (QoL) in adult patients with congenital adrenal hyperplasia (CAH) has been variously reported. However, there is no study evaluating the impact of transition on quality of life.

Methods: Adult patients with classic or non-classic CAH diagnosed during childhood CAH, born between 1970 and 1990, were recruited from the registers of Pediatric departments belonging to the French reference center for endocrine rare disease. Primary end point was the quality of life (WHOQoL -BREF).

Results: Seventy three patients were included in the study, among them 59/73 (81%) were transferred to adult endocrinologist by their pediatricians for transition. WHOQoL -BREF scores were similar between patients with or without transition to specialist adult services, except for environment dimension score, which was slightly higher in CAH patients without transition. However, CAH patients with a regular follow-up had a better physical health, psychological health and environment score and item global quality of life than the group without regular follow-up after transition.

Conclusion: Regular medical follow-up in adulthood is associated with the transition between pediatric and adult care and with better QoL in adults with CAH.