The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: experience in a single centre over 18 years
Abstract
Summary: Background: Congenital adrenal hyperplasia (CAH) has implications throughout a patient's life. The challenges of organizing transition from paediatric to adult care in endocrinology are recognized. Objective: To evaluate whether young people with CAH have been successfully transitioned from paediatric care to specialist adult services and the influence of the introduction of a Young Person Clinic (YPC) where the young person is introduced to the adult endocrinologist. Design, Patients and Measurements: Patients aged 16+ years with CAH who had attended the adrenal clinic at Royal Manchester Children's Hospital between 1992 and 2009 were identified. Clinical information, attendance data in paediatric and adult services were obtained from patient records and the electronic appointment system. Results: A total of 61 patients (27 men) were identified. Thirty‐six patients were referred to specialist adult services from the paediatric service; eighteen of these (50%) were lost to follow‐up (two were never offered an appointment). Only 53% of the whole group attended their first new and subsequent second appointment (i.e. good early attenders). There was no difference in engagement with adult services in those who transitioned through the YPC. Good early attenders were less likely to get lost to follow‐up compared with poor early attenders (11–33% lost to follow‐up compared with 63–71%). Conclusions: Half of all young people with CAH referred to specialist adult services are no longer attending. Introducing the adult endocrinologist prior to transfer had no positive effect on engagement with adult services. Attendance at the first two appointments in the adult services should be seen as an indicator of ‘reasonable’ engagement.
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Age of menarche is normal in well-controlled girls, with no difference between SW, SV and NC CAH.
“Age of menarche is normal in well-controlled girls, with no difference between SW, SV and NC CAH (34,356,372,425,648).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [356]
Adult height of patients with CAH correlates negatively with the glucocorticoid dose administered in early puberty.
“adult height of patients with CAH correlates negatively with the glucocorticoid dose administered in early puberty (356),”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [356]
Cites
Völkl, T. M. K., Simm, D., Beier, C., & Dörr, H. G. (2006) · PEDIATRICS · doi:10.1542/peds.2005-1005 · Cited by 184 · see citing works
Roche, E. F., Charmandari, E., Dattani, M. T., & Hindmarsh, P. C. (2003) · Clinical Endocrinology · doi:10.1046/j.1365-2265.2003.01757.x · Cited by 113 · see citing works
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Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management
Claahsen - van der Grinten, H. L., Speiser, P. W., Ahmed, S. F., Arlt, W., Auchus, R. J., Falhammar, H., Flück, C. E., Guasti, L., Huebner, A., Kortmann, B. B. M., et al. (2022) · Endocrine Reviews · doi:10.1210/endrev/bnab016 · Cited by 556 · see citing works
Management of adolescents with congenital adrenal hyperplasia
Merke, D. P., & Poppas, D. P. (2013) · The Lancet Diabetes & Endocrinology · doi:10.1016/s2213-8587(13)70138-4 · Cited by 134 · see citing works
Approach to the patient: the adult with congenital adrenal hyperplasia
Auchus, R. J., & Arlt, W. (2013) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/jc.2013-1440 · Cited by 121 · see citing works
Management considerations for the adult with congenital adrenal hyperplasia
Auchus, R. J. (2015) · Molecular and Cellular Endocrinology · doi:10.1016/j.mce.2015.01.039 · Cited by 65 · see citing works
Weissberg-Benchell, J., & Shapiro, J. B. (2017) · Pediatric Annals · doi:10.3928/19382359-20170421-01 · Cited by 41 · see citing works
Ali, S. R., Bryce, J., Haghpanahan, H., Lewsey, J. D., Tan, L. E., Atapattu, N., Birkebaek, N. H., Blankenstein, O., Neumann, U., Balsamo, A., et al. (2021) · The Journal of Clinical Endocrinology & Metabolism · doi:10.1210/clinem/dgaa694 · Cited by 39 · see citing works
Evaluating Continuity During Transfer to Adult Care: A Systematic Review
Rachas, A., Lefeuvre, D., Meyer, L., Faye, A., Mahlaoui, N., de La Rochebrochard, E., Warszawski, J., & Durieux, P. (2016) · Pediatrics · doi:10.1542/peds.2016-0256 · Cited by 38 · see citing works
Rachas, A., Tuppin, P., Meyer, L., Falissard, B., Faye, A., Mahlaoui, N., de La Rochebrochard, E., Frank, M., Durieux, P., & Warszawski, J. (2018) · PLoS ONE · doi:10.1371/journal.pone.0193729 · Cited by 28 · see citing works
Rushworth, R. L., Falhammar, H., Munns, C. F., Maguire, A. M., & Torpy, D. J. (2016) · International Journal of Endocrinology · doi:10.1155/2016/5748264 · Cited by 30 · see citing works
Davidse, K., van Staa, A., Geilvoet, W., van Eck, J. P., Pellikaan, K., Baan, J., Hokken-Koelega, A. C. S., van den Akker, E. L. T., Sas, T., Hannema, S. E., et al. (2022) · Endocrine Connections · doi:10.1530/ec-22-0025 · Cited by 16 · see citing works
Evaluating transition in Turner syndrome in the west of Scotland
Zahra, B., Lyall, H., Sastry, A., Freel, E. M., Dominiczak, A. F., & Mason, A. (2021) · Journal of Pediatric Endocrinology and Metabolism · doi:10.1515/jpem-2020-0242 · Cited by 5 · see citing works
- Authors
- Gleeson, H., Davis, J., Jones, J., O'Shea, E., & Clayton, P. E.
- Affiliations
- Leicester Royal Infirmary (GB)
- Royal Manchester Children's Hospital (GB)
- Department of Paediatric Endocrinology Royal Manchester Children's Hospital
- University of Manchester (GB)
- Corresponding author
- Gleeson, Helena
- ORCID
- Clayton, Peter E.
- Venue
- Clinical Endocrinology
- Publisher
- Wiley
- Published
- 2012-12-11
- Volume
- 78
- Issue
- 1
- Pages
- 23-28
- ISSN
- 0300-0664 (ISSN-L)
- 1365-2265
- OpenAlex
- W2108183811
- Cited by
- 103
- References
- 2
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 11 · 2023: 10 · 2022: 14 · 2021: 8 · 2020: 6 · 2019: 15 · 2018: 5 · 2017: 5 · 2016: 8 · 2015: 7 · 2014: 3 · 2013: 3
- FWCI
- 9.98
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Clinical Endocrinology (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- Funders
- Pfizer
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
- Keywords
- congenital adrenal hyperplasia, transition to adult care, patient engagement, loss to follow-up, appointment attendance
- MeSH terms
- Adolescent, Adrenal Hyperplasia, Congenital, Adult, Delivery of Health Care, Female, Humans, Male, Middle Aged, Pediatrics, Young Adult, Transition to Adult Care
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