IDSD2026 Poster Abstracts Poster Abstracts (93 abstracts)
Cross-sectional assessment of health status in adults with CAH in the UK and Ireland – CaHASE2
Nils Krone 1 , Irina A. Bacila 1 , Rebecca Welch 1 , Safwaan Adam 2 , S Faisal Ahmed 3 , Malika Alimussima 3 , Eswari Chinnasamy 4 , Justin H. Davies 5 , Amanda Davis 4 , Jessica Davis 6 , Miguel Debono 7 , Sue Elford 8 , Gabriella Gazdagh 5 , Helena Gleeson 9 , Lynette James 10 , Marta Korbonits 11 , Sofia Llanaha 12 , Julie Lynch 13 , Susan McGeoch 14 , Anna Mitchell 15 , Robert D. Murray 16 , Silvia Nedelcu 14 , Grace Okoro 6 , Michael O’Reilly 17 , Aled Rees 18 , Rebecca Scott 19 , Roland H. Stimson 20 & Jeremy W. Tomlinson 21
1University of Sheffield, Sheffield, United Kingdom; 2Manchester - Christie NHS FT, Manchester, United Kingdom; 3Royal Hospital for Children, Glasgow, United Kingdom; 4Kingston and Richmond Hospital NHS Foundation Trust, London, United Kingdom; 5Southampton University Hospital, Southampton, United Kingdom; 6Society for Endocrinology, UK, Bristol, United Kingdom; 7Sheffield Teaching Hospital NHS Trust, Sheffield, United Kingdom; 8CAH Support Group, Bedford, United Kingdom; 9University Hospital Birmingham, United Kingdom; 10Cardiff and Vale University Health Board, Cardiff, United Kingdom; 11The London School of Medicine and Dentistry, London, University of London; 12City University of London, London, United Kingdom; 13Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom; 14Aberdeen Royal Infirmary, Aberdeen, United Kingdom; 15Newcastle Royal Victoria Infirmary, Newcastle, United Kingdom; 16Department of Endocrinology, St James’s University Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom; 17Dublin Beaumont Hospital, Dublin, Ireland; 18Cardiff University, Cardiff, United Kingdom; 19Chelsea and Westminster Hospital, London, United Kingdom; 20University of Edinburgh, Edinburgh, United Kingdom; 21University of Oxford, Oxford, United Kingdom
Background: Congenital adrenal hyperplasia (CAH) is a common form of primary adrenal insufficiency, affecting approximately 1 in 15,000 individuals. Previous international studies have indicated that adults living with CAH often experience suboptimal health status and care provision. The CaHASE2 initiative was established to evaluate the current clinical status and healthcare outcomes of adults with CAH across the UK and Ireland.
Methods: To date, 488 adults have been recruited from 23 specialist centres. This cross-sectional analysis utilizes real-world clinical data from 254 patients (156 females) across 14 centres, collected during clinic visits between November 2022 and September 2025.
Results: The cohort consisted primarily of younger to middle-aged adults (median age 39.2 years; range 18–86.1), with 26% aged 50 or older. Significant metabolic comorbidities were observed: 26% were overweight, 35% were obese, and 10% were severely obese. Only 34% maintained normal random blood pressure, while 14% required antihypertensive therapy. Additionally, 7% had type 2 diabetes. Mental health concerns were prevalent, with depression in 10% and anxiety in 7% of patients, though data were missing for 16% and 20% respectively. Regarding lifestyle, 9% were current smokers. Treatment predominantly involved prednisolone (42%) and standard hydrocortisone (40%). The median relative hydrocortisone equivalent dose was 12.06 mg/m²/day. The median fludrocortisone dose was 150 μg. Biochemical control varied: one-third of patients had 17-hydroxyprogesterone (17OHP) levels below 10 nmol/l, one-third between 10–36 nmol/l, and one-third above 36 nmol/l. Most patients (70%) had androstenedione levels below 8 nmol/l. Notably, no correlation was found between glucocorticoid dosage and patient weight or body surface area.
Conclusion: These findings provide clear signals of ongoing impaired health status and suboptimal disease control in adults with CAH. Future efforts will focus on enhancing longitudinal data completeness to facilitate benchmarking and improve healthcare provision variations.
Volume 118
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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