Psychosocial retrospective follow-up of young adults with congenital adrenal hyperplasia
Authors' conclusion
A genotype-dependent difference in social wellbeing was seen at an early age, with lower scores in participants with the severe form of CAH. Patients with poor wellbeing as children may be at risk of reduced QoL as adults.
Study context
- Population
- Patients with congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency, age range 20–60 years
- Participants
- 75 vs 20
- Exposure
- Patients with CAH vs healthy female controls
- CAHn = 75
- Controlsn = 20reference
- Outcome
- Self-reported life situation and social wellbeing over time (lifeline, numeric rating scale), perceived disease limitations and QoL
- Follow-up
- 8 time periods (range 4-31 years)
Methodological detailsstructured interview, survey questionnaires
- Structured interview
- Survey questionnaires
Main finding
As reported in the abstract
Lifeline scores of social wellbeing over time · school age
- Genotype-dependent difference in lifeline scores during school age, lowest social wellbeing in severe forms of CAH
- Females scored lower than males, irrespective of severity, and lower than the control group
Observational data: associations, not effects.
Further findings
Perceived social limitation
- Females with CAH reported more perceived social limitation than males
Quality of life (QoL) (AddiQoL)
- QoL scores correlated with mean levels of lifeline scores
Original publication
Psychosocial retrospective follow-up of young adults with congenital adrenal hyperplasia. Eur J Endocrinol. Published 2 July 2026. doi:10.
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