BSPED2023 Poster Presentations Adrenal 2 (8 abstracts)
National service evaluation of care for children and young people with congenital adrenal hyperplasia in the UK: Survey responses from patients and clinicians
Neil Lawrence 1,2 , Irina Bacila 1 , Xiaochen Ji 1 , S Faisal Ahmed 3 , Sabah Alvi 4 , Louise Bath 5 , Jo Blair 6 , Tim Cheetham 7,8 , Liz Crowne 9 , Justin H Davies 10 , Mehul Dattani 11 , Evelien Gevers 12 , Ruth Krone 13 , Leena Patel 14 , Ajay Thankamony 15,16 , Tabitha Randell 17 , Fiona Ryan 18 , Sue Elford 19 , Sallyann Blackett 19 & Nils Krone 1,2
1The University of Sheffield, Sheffield, UK; 2Sheffield Children’s Hospital, Sheffield, UK; 3The University of Glasgow, Glasgow, UK; 4Leeds Children’s Hospital, Leeds, UK; 5Royal Hospital for Sick Children, Edinburgh, UK; 6Alder Hey Children’s Hospital, Liverpool, UK; 7The University of Newcastle, Newcastle, UK; 8Great North Children’s Hospital, Newcastle, UK; 9University Hospitals Bristol and Weston Foundation Trust, Bristol, UK; 10University Hospital Southampton, Southampton, UK; 11Great Ormond Street Hospital, London, UK; 12London and Barts Health NHS Trust, London, UK; 13Birmingham Women’s and Children’s Hospital, Birmingham, UK; 14Royal Manchester Children’s Hospital, Manchester, UK; 15The University of Cambridge, Cambridge, UK; 16Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK; 17Nottingham Children’s Hospital, Nottingham, UK; 18Oxford Children’s Hospital, Oxford, UK; 19CAH Support Group, Birmingham, UK
Aim: To quantify difference in service provision for children and young people (CYP) living with 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 (43 patients, 152 carers), as well as 34 clinicians from 33 hospitals. Only 11.8% of clinicians were ‘completely satisfied’ with the service provided, compared to 67.6% of carers and 76.2% of patients. Patients and carers reported confidence in managing the chronic aspects of CAH, but only 40.3% of carers felt confident in an emergency. Whilst 94.1% 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 when compared to diabetes education courses, although comments reflected a wide variety of approaches to patient education in CAH. One third of clinicians report less than 1 hour of training, and 2/3 report training is done in less than 4 hours, with only 47.1% of clinicians always ensuring school is contacted directly. Appetite for further training was higher in carers (85.5%) than patients (54.8%), although further ‘unsure’ responses suggested formal training sessions would likely be well attended. There was good satisfaction among patients/carers regarding time dedicated to discussions about general wellbeing and management of CAH. However, carers reported psychological (48.0%) and cardiovascular effects (40.0%) were insufficiently addressed, clinicians also acknowledging these topics are rarely addressed alongside infertility and impact on adult height. Biochemical monitoring of treatment was broadly in keeping with international guidelines, with 66.7% of clinicians reporting regular use of dried blood spots, and 11.8% 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 impact of CAH and delivering formal training about the disease and its management would benefit patients and carers.
Volume 95
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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