Evaluating transition in Turner syndrome in the West of Scotland
-
Baryab Zahra
,
Helen Lyall
Abstract
Background
A Turner Syndrome (TS) Transition clinic, Royal Hospital for Children Glasgow (RHCG), with paediatric and adult endocrinology/gynaecology teams was established in 1998 with an aim of improving health outcomes in TS throughout the lifespan.
Objective
To evaluate the success of our TS transition service, focussing on evaluating established follow-up after transfer to adult services.
Methods
Girls attending the TS Transition clinic at Royal Hospital for Children Glasgow, 1998–2017, were identified. Attendance data were obtained from patient records and an electronic appointment system. We assessed good and late early attendance in our cohort of TS patients as well as established endocrine follow-up, defined as those still attending adult endocrine services 3 years after transfer. Success of TS transition was determined by the proportion of girls in established endocrine follow-up.
Results
Forty-six girls (median age 18.3 yrs) were identified. Thirty-six, 36/46 girls transferred prior to 2015 and 26 of those (72%) were in established follow-up at 3 years, 22/36 girls had met with an Adult specialist prior to transfer and 14/36 had not met with an adult specialist prior to transfer. Twenty-one (80.7%) were good early attenders (p = 0.10). In the early attenders’ cohort, there was no significant difference between those that had and had not met an adult specialist prior to transfer.
Conclusion
A significant proportion of girls with TS are currently lost to endocrine follow-up following transfer to adult clinics. Early attendance at an adult clinic appears to predict established long-term follow-up. Strategies to improve early attendance and long-term endocrine follow-up are needed to ensure lifelong health needs are addressed.
Research funding: None declared.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
Ethical approval: This study did not require ethics approval or informed consent as it was conducted as part of healthcare evaluation of routine clinical practice and according to national guidance.
Data availability statement: The data that support the findings of this study are available within the paper and openly available in Journal of Paediatric Endocrinology and Metabolism.
References
1. Culen, C, Ertl, D, Schubert, K, Bartha-Doering, L, Haeusler, G. Care of girls and women with Turner syndrome: beyond growth and hormones. Endocr Connect 2017;6:39–51. https://doi.org/10.1530/ec-17-0036.Suche in Google Scholar
2. Sybert, VP, McCauley, E. Turner’s syndrome. N Engl J Med 2004;351:1227–38. https://doi.org/10.1056/nejmra030360.Suche in Google Scholar
3. Stochholm, K, Juul, S, Juel, K, Naeraa, R, Højbjerg Gravholt, C. Prevalence, incidence, diagnostic delay, and mortality in Turner syndrome. J Clin Endocrinol Metab 2006;91:3897–902. https://doi.org/10.1210/jc.2006-0558.Suche in Google Scholar
4. Morgan, T. Turner syndrome: diagnosis and management. Am Fam Physician 2007;76:405–17.Suche in Google Scholar
5. Downing, J, Gleeson, H, Clayton, P, Davis, J, Wales, J, Callery, P. Transition in endocrinology: the challenge of maintaining continuity. Clin Endocrinol 2012;78:29–35. https://doi.org/10.1111/j.1365-2265.2012.04473.x.Suche in Google Scholar
6. Gleeson, H, Davis, J, Jones, J, O’Shea, E, Clayton, P. 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. Clin Endocrinol 2012;78:23–8. https://doi.org/10.1111/cen.12053.Suche in Google Scholar
7. Joseph Rowntree Foundation. Moving into adulthood: young disabled people moving into adulthood. Available from: https://www.jrf.org.uk/report/moving-adulthood-young-disabled-people-moving-adulthood [Accessed 22 Nov 2020].Suche in Google Scholar
8. Viuff, M, Gravholt, C. Care of adult women with Turner syndrome: the state of affairs in Germany. Endocr Connect 2019;8:1-C.10.1530/EC-19-0480Suche in Google Scholar PubMed PubMed Central
9. Field, M, Jette, A. Health care transitions for young people. In: The future of disability in America. Washington, D.C: The National Academies Press; 2007. pp. 98–133.Suche in Google Scholar
10. Bolton-Maggs, P. Transition of care from paediatric to adult services in haematology. Arch Dis Child 2007;92:797–801. https://doi.org/10.1136/adc.2006.103804.Suche in Google Scholar
11. Zurynski, Y, Elliott, E. Challenges of transition to adult health services for patients with rare diseases. Med J Aust 2013;19811:575–6. https://doi.org/10.5694/mja13.10424.Suche in Google Scholar
12. Medscape. National centers needed to aid transition in Turner syndrome. Available from: https://www.medscape.com/viewarticle/803562 [Accessed 7 Jan 2020].Suche in Google Scholar
13. Lin, A, Prakash, S, Andersen, N, Viuff, M, Levitsky, L, Rivera-Davila, M, et al.. Recognition and management of adults with Turner syndrome: from the transition of adolescence through the senior years. Am J Med Genet A 2019;179:1987–2033. https://doi.org/10.1002/ajmg.a.61310.Suche in Google Scholar
14. American College of Physicians. Turner syndrome. Available from: https://www.acponline.org/system/files/documents/clinical_information/high_value_care/clinician_resources/pediatric_adult_care_transitions/endo_turner/endo_ts_transition_tools.pdf [Accessed 22 Nov 2020].Suche in Google Scholar
15. Royal College of Paediatrics and Child Health. Best practice examples of health transition. Available from: https://www.rcpch.ac.uk/resources/best-practiceexamples- health-transition [Accessed 22 Nov 2020].Suche in Google Scholar
16. Gravholt, C, Andersen, N, Conway, G, Dekkers, O, Geffner, M, Klein, K, et al.. Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting. Eur J Endocrinol 2017;177:1–70. https://doi.org/10.1530/eje-17-0430.Suche in Google Scholar
17. Endocrine Society. Turner syndrome. Available from: https://www.endocrine.org/guidelines-andclinical-practice/transitions/turner-syndrome [Accessed 6 Sep 2020].Suche in Google Scholar
18. Hokken-Koelega, A, Lely, A, Hauffa, B, Häusler, G, Johannsson, G, Maghnie, M, et al.. Bridging the gap: metabolic and endocrine care of patients during transition. Endocr Connect 2016;5:44–54. https://doi.org/10.1530/ec-16-0028.Suche in Google Scholar
19. Kruszka, P, Silberbach, M. The state of Turner syndrome science: are we on the threshold of discovery. Am J Med Genet C 2019;1811:4–6. https://doi.org/10.1002/ajmg.c.31688.Suche in Google Scholar
20. Schoemaker, M, Swerdlow, A, Higgins, C, Wright, A, Jacobs, P. Mortality in women with Turner syndrome in Great Britain: a national cohort study. J Clin Endocrinol 2008;93:4735–42. https://doi.org/10.1210/jc.2008-1049.Suche in Google Scholar
21. Turtle, E, Sule, A, Bath, L, Denvir, M, Gebbie, A, Mirsadraee, S, et al.. Assessing and addressing cardiovascular risk in adults with Turner syndrome. Clin Endocrinol 2013;78:639–45. https://doi.org/10.1111/cen.12104.Suche in Google Scholar
22. Bernard, V, Donadille, B, Le Poulennec, T, Nedelcu, M, Martinerie, L, Christin-Maitre, S. Management of endocrine disease: transition of care for young adult patients with Turner syndrome. Eur J Endocrinol 2019;180:1–7. https://doi.org/10.1530/eje-18-0238.Suche in Google Scholar
23. Cadario 1, F, Prodam, F, Bellone, S, Trada, M, Binotti, M, Trada, M, et al.. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol 2009;71:346–50. https://doi.org/10.1111/j.1365-2265.2008.03467.x.Suche in Google Scholar
© 2021 Walter de Gruyter GmbH, Berlin/Boston
Artikel in diesem Heft
- Frontmatter
- Original Articles
- The utility of next-generation sequencing technologies in diagnosis of Mendelian mitochondrial diseases and reflections on clinical spectrum
- PATRO children, a multi-center, non-interventional study of the safety and effectiveness of Omnitrope® (somatropin) treatment in children: update on the United States cohort
- Effect of vitamin K2 and vitamin D3 on bone mineral density in children with acute lymphoblastic leukemia: a prospective cohort study
- Diagnostic utility of fine needle aspiration cytology in pediatric thyroid nodules based on Bethesda Classification
- Ultrasonographic determination of thyroid volume in infants and children from Aegean region of Turkey and comparison with national and international references
- Association of thyroid autoimmunity and the response to recombinant human growth hormone in Turner syndrome
- Evaluating transition in Turner syndrome in the West of Scotland
- Short-term effects of gonadotropin-releasing hormone analogue treatment on leptin, ghrelin and peptide YY in girls with central precocious puberty
- Metabolic syndrome and risk factors after hematopoietic stem cell transplantation in children and adolescents
- Urinary bisphenol A levels in prepubertal children with exogenous obesity according to presence of metabolic syndrome
- Associations of insulin-induced lipodystrophy in children, adolescents, and young adults with type 1 diabetes mellitus using recombinant human insulin: a cross-sectional study
- Incidence of diabetes in children and adolescents in Dhaka, Bangladesh
- Case Reports
- False-positive very long-chain fatty acids in a case of autoimmune adrenal insufficiency
- Prepubescent unilateral gynecomastia secondary to excessive soy consumption
- Detection of hepatocyte nuclear factor 4A(HNF4A) gene variant as the cause for congenital hyperinsulinism leads to revision of the diagnosis of the mother
- Coexistence of dyschondrosteosis associated to SHOX deficiency, pseudohypoparathyroidism 1B, and chronic autoimmune thyroiditis: a case report
Artikel in diesem Heft
- Frontmatter
- Original Articles
- The utility of next-generation sequencing technologies in diagnosis of Mendelian mitochondrial diseases and reflections on clinical spectrum
- PATRO children, a multi-center, non-interventional study of the safety and effectiveness of Omnitrope® (somatropin) treatment in children: update on the United States cohort
- Effect of vitamin K2 and vitamin D3 on bone mineral density in children with acute lymphoblastic leukemia: a prospective cohort study
- Diagnostic utility of fine needle aspiration cytology in pediatric thyroid nodules based on Bethesda Classification
- Ultrasonographic determination of thyroid volume in infants and children from Aegean region of Turkey and comparison with national and international references
- Association of thyroid autoimmunity and the response to recombinant human growth hormone in Turner syndrome
- Evaluating transition in Turner syndrome in the West of Scotland
- Short-term effects of gonadotropin-releasing hormone analogue treatment on leptin, ghrelin and peptide YY in girls with central precocious puberty
- Metabolic syndrome and risk factors after hematopoietic stem cell transplantation in children and adolescents
- Urinary bisphenol A levels in prepubertal children with exogenous obesity according to presence of metabolic syndrome
- Associations of insulin-induced lipodystrophy in children, adolescents, and young adults with type 1 diabetes mellitus using recombinant human insulin: a cross-sectional study
- Incidence of diabetes in children and adolescents in Dhaka, Bangladesh
- Case Reports
- False-positive very long-chain fatty acids in a case of autoimmune adrenal insufficiency
- Prepubescent unilateral gynecomastia secondary to excessive soy consumption
- Detection of hepatocyte nuclear factor 4A(HNF4A) gene variant as the cause for congenital hyperinsulinism leads to revision of the diagnosis of the mother
- Coexistence of dyschondrosteosis associated to SHOX deficiency, pseudohypoparathyroidism 1B, and chronic autoimmune thyroiditis: a case report
