National Service Evaluation of the Quality of Care for Children and Young People with Congenital Adrenal Hyperplasia in the UK: Survey Responses from Patients and Clinicians
Authors' conclusion
While there is overall good satisfaction with care provision among patients and carers with CAH in the UK, extra resources addressing the psychological and educational needs about the disease and its management would benefit patients and carers. Improved access to allied health professionals and psychologists will help support families and improve patient outcomes.
Study context
- Population
- Children and young people (CYP) aged 0–20 years with congenital adrenal hyperplasia (CAH) attending 33 UK secondary and tertiary clinics, their carers, and clinicians195 responses · 34 clinicians
- Participants
- 34 / 152 / 43
- Exposure
- Clinicians vs Carers vs Patients
- Cliniciansn = 34
- Carersn = 152
- Patientsn = 43
- Outcome
- "Completely satisfied" with the service provided
Methodological detailsnational service evaluation, online questionnaires
- National service evaluation
- Online questionnaires
Main finding
As reported in the abstract
Observational data: associations, not effects.
Further findings
| Outcome | Carers | Patients |
|---|---|---|
| Appetite for further training | 86% | 55% |
Formal training
- Clinicians reporting providing formal training to families
- 94%
- Patients and carers reporting not attending what they considered formal training
- over 80%
Clinician-reported service aspects
- Access to psychological services difficult
- 44%
- Regular use of dried blood spots
- 67%
- Regular urinary steroid metabolites
- 12%
Original publication
National Service Evaluation of the Quality of Care for Children and Young People with Congenital Adrenal Hyperplasia in the UK: Survey Responses from Patients and Clinicians. Horm Res Paediatr. Published 12 March 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →