Quality of Life in Children and Young People With Congenital Adrenal Hyperplasia—UK Nationwide Multicenter Assessment
Authors' conclusion
In CYP with CAH, reduced height, increased weight, and hormonal biomarkers consistent with overtreatment were associated with worse QoL; addressing these problems should be prioritized in clinical management.Clinical Trials
Study context
- Population
- Children and young people (CYP) with congenital adrenal hyperplasia (CAH), tertiary care in 14 UK centres; 55% female, mean age 12.7 years (SD 3.0), paired parent responses
- Participants
- 104 participants
- Exposure
- CYP with CAH vs normative data
- Outcome
- Total QoL scores by SDQ and a pediatric QoL questionnaire vs normative data
Methodological detailsmulticentre, nationwide
- Multicentre
- Nationwide
Main finding
As reported in the abstract
Total QoL scores vs normative data
- Total scores worse in parents than normative data, but similar in patients
- Patient-rated: Quality of life (QoL) better in social functioning but worse in emotional, school and peer domains
- Parent-rated: worse total scores and peer problems, psychosocial, emotional and school functioning domains
Observational data: associations, not effects.
Further findings
Parent vs child rating
- Parents consistently scored their children's QoL lower than the child
Associations with QoL
- Larger height-SD score and lower weight-SD score associated with better QoL
- Girls with lower steroid biomarkers had worse Strengths and Difficulties questionnaire (SDQ) scores
Original publication
Quality of Life in Children and Young People With Congenital Adrenal Hyperplasia—UK Nationwide Multicenter Assessment. J Clin Endocrinol Metab. Published 13 July 2023. doi:10. 1210/ clinem/ dgad405
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