Readiness for transition to adult care in adolescents and young adults with Turner syndrome
Abstract
Objectives Turner syndrome (TS) is a complex and chronic medical condition that requires lifelong subspecialty care. Effective transition preparation is needed for successful transfer from pediatric to adult care in order to avoid lapses in medical care, explore health issues such as fertility, and prepare caregivers as adolescents take over responsibility for their own care. The objective of this study was to evaluate accuracy of knowledge of personal medical history and screening guidelines in adolescents and young adults (AYA) with TS. Methods This was a prospective cross-sectional study of 35 AYA with TS of ages 13-22 years recruited from a tertiary care center. AYA completed questionnaires on personal medical history, knowledge of screening guidelines for TS, and the Transition Readiness Assessment Questionnaire (TRAQ). Results Eighty percent of AYA with TS were 100% accurate in reporting their personal medical history. Only one-third of AYA with TS were accurate about knowing screening guidelines for individuals with TS. Accuracy about knowing screening guidelines was significantly associated with TRAQ sum scores (r = 0.45, p < 0.05). However, there was no association between knowledge of personal medical history and TRAQ sum scores. Conclusions Transition readiness skills, TS-specific knowledge, and accurate awareness of health-care recommendations are related, yet distinct, constructs. Understanding of one's personal medical history is not an adequate surrogate for transition readiness. Validated tools for general transition, like the TRAQ, can be used but need to be complemented by TS-specific assessments and content. Providers are encouraged to identify opportunities for clinical and educational interventions well in advance of starting transfer to adult care.
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In a US single center study, 80% of all TS adolescents were 100% accurate in reporting their personal medical history.
“Moreover, although 80% of all TS adolescents were 100% accurate in reporting their personal medical history in a US single center study, this accuracy was not an adequate surrogate for transition readiness.549”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [549]
Accuracy in reporting personal medical history was not an adequate surrogate for transition readiness in TS adolescents.
“Moreover, although 80% of all TS adolescents were 100% accurate in reporting their personal medical history in a US single center study, this accuracy was not an adequate surrogate for transition readiness.549”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [549]
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- Authors
- Sheanon, N. M., Beal, S. J., Kichler, J. C., Casnellie, L., Backeljauw, P., & Corathers, S.
- Affiliations
- Cincinnati Children's Hospital Medical Center (US)
- University of Windsor (CA)
- Corresponding author
- Sheanon, Nicole M.
- ORCID
- Venue
- Journal of Pediatric Endocrinology and Metabolism
- Publisher
- Walter de Gruyter GmbH
- Published
- 2020-08-28
- Volume
- 33
- Issue
- 9
- Pages
- 1165-1171
- ISSN
- 0334-018X (ISSN-L)
- 2191-0251
- OpenAlex
- W3082632030
- Cited by
- 10
- References
- 16
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 4 · 2023: 1 · 2022: 1 · 2021: 2
- FWCI
- 1.42
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Pediatric Endocrinology and Metabolism (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center
- National Center for Advancing Translational Sciences of the National Institutes of Health (UL1TR000077)
- 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 › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- Turner syndrome, transition to adult care, transition readiness, adolescents and young adults, Transition Readiness Assessment Questionnaire, self-management, health literacy
- MeSH terms
- Adolescent, Adult, Cross-Sectional Studies, Female, Follow-Up Studies, Humans, Male, Patient Acceptance of Health Care, Patient Education as Topic, Prognosis, Prospective Studies, Surveys and Questionnaires, Turner Syndrome, Young Adult, Transition to Adult Care
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