ESPE Abstracts (2023) 97 P1-569

ESPE2023 Poster Category 1 Sex Differentiation, Gonads and Gynaecology, and Sex Endocrinology (56 abstracts)

National service evaluation project analysing the quality of care for children and young people with congenital adrenal hyperplasia in the United Kingdom: Data from patients and clinicians

Irina Bacila 1,2 , Neil R Lawrence 1,2 , Xiaochen Ji 1,3 , S Faisal Ahmed 4 , Sabah Alvi 5 , Louise Bath 6 , Jo Blair 7 , Tim Cheetham 8 , Liz Crowne 9 , Justin H Davies 10 , Mehul Dattani 11 , Evelien Gevers 12 , Ruth Krone 13 , Leena Patel 14,15 , Ajay Thankamony 16,17 , Tabitha Randell 18 , Fiona Ryan 19 , Sue Elford 20 , Sallyann Blackett 20 & Nils P Krone 1,2

1University of Sheffield, Sheffield, United Kingdom. 2Sheffield Children's Hospital, Sheffield, United Kingdom. 3Second Affiliated Hospital of Dalian Medical University, Dalian, China. 4University of Glasgow, Glasgow, United Kingdom. 5Leeds General Infirmary, Leeds, United Kingdom. 6Royal Hospital For Sick Children, Edinburgh, United Kingdom. 7Alder Hey Children's Hospital, Liverpool, United Kingdom. 8Great North Children's Hospital, Newcastle, United Kingdom. 9Bristol Royal Hospital for Children, Bristol, United Kingdom. 10University Hospital Southampton, Southampton, United Kingdom. 11Great Ormond Street Hospital, London, United Kingdom. 12Queen Mary University Hospital, London, United Kingdom. 13Birmingham Women and Children's Hospital, Birmingham, United Kingdom. 14Royal Manchester Children's Hospital, Manchester, United Kingdom. 15University of Manchester, Manchester, United Kingdom. 16University of Cambridge, Cambridge, United Kingdom. 17Cambridge University Hospitals, Cambridge, United Kingdom. 18Nottingham Children's Hospital, Nottingham, United Kingdom. 19Oxford Children's Hospital, Oxford, United Kingdom. 20CAH Support Group, Tamworth, United Kingdom

Background: The variation in the provision of services in secondary and tertiary care for children and young people living with CAH in the United Kingdom is unknown. We aimed to conduct a nationwide service evaluation to inform from both the patient and clinician perspective.

Methods: We conducted an anonymous multicentre survey using online questionnaires for clinicians and CAH patients/carers. Clinical leads from UK centres managing children and young persons with CAH were contacted directly and asked to circulate questionnaires to their colleagues and patients. Patient/carer questionnaires were also circulated by the “Living with CAH” support group. Main themes investigated were frequency of assessment, investigations employed and provision of education for patients/carers.

Results: We received 56 patient responses (33 females) and 125 from carers (63 caring for a female patient). Of 33 clinicians from 18 centres who responded, 73% were consultant endocrinologists and 79% had over 5 years’ experience managing CAH. CAH monitoring is largely consistent with international guidelines, with 64% regular use of dried blood spots, and 9% monitoring urinary steroid metabolites. Patients and carers were overall satisfied with the frequency of discussions regarding general wellbeing, and acute and chronic management of CAH, but 33.6%, 36.2%, 49.2% of carers would have preferred more discussion fertility, heart disease, and psychological effects respectively. Clinicians reported that psychological effects of CAH, levels of physical activity, infertility and reduced adult height, ranked highest among topics that are rarely discussed. Most patients and carers reported high confidence in dealing with the chronic aspects of CAH (68.9% and 80.5% respectively), but fewer carers reported very high confidence in acute illness (50.5%) and emergency (33.9%). Only 12.3% of carers and 6.4% of patients report receiving formal training to manage CAH, whilst 95% of clinicians report provision of formal training to families. A high appetite for further education and self-management training was reported by both carers (86%) and patients (64%). The overall satisfaction with the medical service provided was ranked very good for 62% carers and 47% patients, although only 12% of clinicians were ‘completely satisfied’ with the service they provided.

Conclusions: Preliminary data shows patients and carers feel confident managing CAH and have good satisfaction with services. Addressing the psychological impact of CAH is perceived as an unmet need by both patients and clinicians. The discordance between what patients and clinicians consider as formal training to manage the disease is another area for improvement.

Volume 97

61st Annual ESPE (ESPE 2023)

The Hague, Netherlands
21 Sep 2023 - 23 Sep 2023

European Society for Paediatric Endocrinology 

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