Transition-related discussions among adolescent females with Turner syndrome: current practices and associated factors
Abstract
Objective To examine the current transition practices and factors associated with the occurrence and timing of transition-related discussions among adolescents with Turner syndrome (TS).Methods A retrospective chart review was conducted at a large pediatric academic center among females with TS seen between 12 and 25 years of age. Medical/developmental characteristics, the age at transition, documented transition-related discussions, and the utilization of transition readiness assessment tools were abstracted. Analyses were conducted to examine the age/occurrence of discussions and associated factors.Results Records of 112 patients were reviewed. The average age of TS diagnosis was 7.6 ± 5.8 years, and the average age of those that transitioned from pediatric to adult care (n = 21) was 20.1 ± 2.0 years. Only 22% of individuals had documented discussions regarding transition to adult care, and no transition readiness tools were utilized. The majority of transition-related discussions began between 11 and 15 years. Estrogen and cardiovascular counseling were common (84% and 75%, respectively). Less than half of the subjects had reproductive (40%), lifestyle (43%), and psychosocial (12%) discussions. Cardiovascular conditions were associated with transition to adult care discussions, and neurodevelopmental conditions were associated with psychosocial counseling. In those that transitioned to adult care, transition-related discussions occurred in only half of patients.Conclusion Our findings emphasize the need for the development and implementation of a standardized transition process for adolescents with TS, with particular attention to transition to adult care and reproductive, lifestyle, and psychosocial counseling. The utilization of formal transition tools may also help prepare these girls for transition to adult care.
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Transition tools are not routinely used in TS care.
“Identifying implementation strategies for these tools is also critical, as research has shown transition discussions are inconsistent (particularly regarding reproductive, lifestyle, and psychosocial factors) and that transition tools are not routinely used in TS care.539”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [539]
Research has shown transition discussions are inconsistent, particularly regarding reproductive, lifestyle, and psychosocial factors.
“Identifying implementation strategies for these tools is also critical, as research has shown transition discussions are inconsistent (particularly regarding reproductive, lifestyle, and psychosocial factors) and that transition tools are not routinely used in TS care.539”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [539]
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Clinical practice guidelines for the care of girls and women with Turner syndrome.
Gravholt, C. H., Andersen, N. H., Christin-Maitre, S., Davis, S. M., Duijnhouwer, A., Gawlik, A., Maciel-Guerra, A. T., Gutmark-Little, I., Fleischer, K., Hong, D., et al. (2024) · European Journal of Endocrinology · doi:10.1093/ejendo/lvae050 · Cited by 224 · see citing works
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Transition to Adult Care in Turner Syndrome: Research Gaps and Strategies for Achieving Success
Nahata, L., Verlinde, F., Stochholm, K., & Gutmark‐Little, I. (2025) · American Journal of Medical Genetics Part C Seminars in Medical Genetics · doi:10.1002/ajmg.c.32131 · Cited by 2 · see citing works
“Experts have recommended utilizing transition tools to assess readiness and identify barriers to transition (Bernard et al. 2019), though research suggests they have not been routinely integrated into care (Patel, Davis, and Nahata 2021).”
- Authors
- Patel, N., Davis, S., & Nahata, L.
- Affiliations
- Nationwide Children's Hospital (US)
- Children's Hospital Colorado (US)
- Corresponding author
- Patel, Nisha
- Venue
- Endocrine Practice
- Publisher
- Elsevier BV
- Published
- 2021-01
- Volume
- 27
- Issue
- 1
- Pages
- 56-62
- ISSN
- 1530-891X (ISSN-L)
- OpenAlex
- W3089263602
- Cited by
- 4
- References
- 40
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 1 · 2022: 1
- FWCI
- 0.71
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Endocrine Practice (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Keywords
- Turner syndrome, adolescent girls, transition to adult care, transition readiness assessment, reproductive counseling, psychosocial counseling, neurodevelopmental disorders, estrogen therapy
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Counseling, Estrogens, Female, Humans, Infant, Retrospective Studies, Turner Syndrome, Young Adult, Transition to Adult Care
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