SFEBES2023 Poster Presentations Adrenal and Cardiovascular (78 abstracts)
Service evaluation suggests variation in clinical care provision in adults with congenital adrenal hyperplasia in the UK and Ireland
Lauren Madden Doyle 1 , Syed Faisal Ahmed 2 , Sue Elford 3 , Yasir Elhassan 4 , Lynette James 5 , Neil Lawrence 6 , Sofia Llahana 7 , Aled Rees 8 , Jeremy Tomlinson 9 , Michael O’Reilly 1 & Nils Krone 6
1Academic Division of Endocrinology, Department of Medicine, Royal College of Surgeons in Ireland (RCSI), Dublin, Ireland. 2Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, United Kingdom. 3CAH Support Group, Living with CAH, Cambridge, United Kingdom. 4Department of Diabetes, Endocrinology and Metabolism, Queen Elizabeth Hospital Birmingham, Birmingham, United Kingdom. 5University Hospital of Wales, Cardiff, United Kingdom. 6Department of Oncology and Metabolism, University of Sheffield, Sheffield, United Kingdom. 7Department of Diabetes & Endocrinology, University College Hospital, London, United Kingdom. 8Neuroscience and Mental Health Research Institute, School of Medicine, Cardiff University, Cardiff, United Kingdom. 9Oxford Centre for Diabetes, Endocrinology & Metabolism, University of Oxford, Oxford, United Kingdom
Background: The Congenital adrenal Hyperplasia (CAH) Adult Study Executive (CaHASE) identified poor metabolic outcomes and reduced quality of life in CAH. CaHASE2 was recently established to examine the current status of CAH care. We surveyed clinical practice in the UK and Ireland, and awareness and use of the International CAH (I-CAH) Registry.
Methods: We undertook an anonymised online survey targeting clinicians providing care for patients with CAH. Respondents were asked questions relating to biochemical monitoring, glucocorticoid replacement, management of comorbidities and use of the I-CAH Registry.
Results: Among 65 respondents, 42% reported management of patients with CAH within specialist clinics, whilst the majority managed in General Endocrinology clinics. Clinical assessment frequency was similar in both settings, with review every six months in 37% of specialist and of general services. Notable differences were identified regarding treatment and use of biomarkers. Modified-release hydrocortisone and combination glucocorticoid regimens were utilised more frequently in specialist clinics (62% vs 13%; P=0.001). Androstenedione was measured in 70% of specialist clinics compared to 55% in general services (P=0.44). Renin assessment was greater in specialist than general clinics (81 vs 58%, P=0.25). In specialist clinics, reliance on ACTH (30%) and DHEA-S (44%) was high, indicating limited concordance with management guidelines. There was no consensus on optimal timing of monitoring biochemistry, with 57% of respondents not considering recent glucocorticoid dose timing. Semen analysis was offered in 56% of specialist clinics compared to 34% of general services. 26% of respondents in specialist clinics used the I-CAH registry; 34% of those in general clinics were unaware of the registry, compared to 19% in specialist services.
Conclusions: This survey suggests marked heterogeneity in clinical care of CAH. Future initiatives are required to raise awareness of the I-CAH registry, enabling clinical outcome assessment to standardise CAH management.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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