Browse by author
Lookup NU author(s): Professor Timothy Cheetham
Full text for this publication is not currently held within this repository. Alternative links are provided below where available.
© 2024 S. Karger AG, Basel.Introduction: Quantifying differences in service provision for children and young people (CYP) living with congenital adrenal hyperplasia (CAH) across the UK. Methods: A national service evaluation using online questionnaires circulated to patients and clinicians from secondary and tertiary UK centres managing CYP with CAH and via the “Living with CAH” support group mailing list. Results: Total of 195 responses relating to patients aged 0-20 years attending 33 clinics (43 patients, 152 carers), as well as 34 clinicians from 18 trusts working across the 33 clinics. Only 12% of clinicians were “completely satisfied” with the service provided, compared to 68% of carers and 76% of patients. While 94% of clinicians reported providing formal training to families with CAH, over 80% of both patients and carers reported not attending what they considered formal training. Appetite for further training was higher in carers (86%) than patients (55%), although further “unsure” responses suggested formal training sessions would likely be well attended. Access to psychological services was difficult for 44% of clinicians. Biochemical monitoring of treatment was broadly in keeping with international guidelines, with 67% of clinicians reporting regular use of dried blood spots and 12% reporting regular urinary steroid metabolites. 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.
Author(s): Lawrence NR, Bacila IA, Collins GS, Dawson J, Lang Z-Q, Ji X, Ahmed SF, Alvi S, Bath LE, Blair J, Cheetham T, Crowne EC, Davies JH, Dattani M, Gevers EF, Krone R, Patel L, Thankamony A, Randell T, Ryan F, Elford S, Blackett S, Krone NP
Publication type: Article
Publication status: Published
Journal: Hormone Research in Paediatrics
Year: 2024
Issue: ePub ahead of Print
Online publication date: 12/03/2024
Acceptance date: 29/01/2024
ISSN (print): 1663-2818
ISSN (electronic): 1663-2826
Publisher: S. Karger AG
URL: https://doi.org/10.1159/000537978
DOI: 10.1159/000537978
PubMed id: 38471495
Altmetrics provided by Altmetric
