Less ready for adulthood?—Turner syndrome has an impact on transition readiness
Open accessAbstract
OBJECTIVE: Young women with Turner syndrome (TS) are known to be at risk for loss to medical follow-up. Recent literature indicates that there are disparities regarding transition readiness between different chronic conditions. So far, studies in young women with TS investigating their transition readiness compared to youths with other chronic conditions with no or minor neurocognitive challenges have not been reported. METHODS: Patients (n = 52), 26 patients with Turner syndrome (mean age 17.24 ± 2.10) and 26 controls with type 1 diabetes or a rheumatic disease (mean age 17.41 ± 2.44), were recruited from specialized paediatric endocrine outpatient clinics. The Transition Readiness Assessment Questionnaire TRAQ-GV-15 was used to compare transition readiness scores between TS and controls. In addition, information on individual handling of the questionnaire was obtained. Descriptive statistics and nonparametric methods were used to analyse the data. RESULTS: Significant differences for transition readiness scores were found between the two study groups. The global TRAQ-GV-15 score was significantly lower for females with TS. In particular, subscale 1 'autonomy' of the TRAQ-GV-15 showed lower scores in patients with TS. Patients with TS needed significantly more help and more time to complete the questionnaire. CONCLUSION: Special attention should be given to young women with Turner syndrome in the preparation for the transitional phase. By incorporating the assessment of transition readiness specialists will find it easier to identify underdeveloped skills and knowledge gaps in their patients. Unless a multidisciplinary young adult clinic is established, an older age than 18 years at transfer to adult endocrine care might be beneficial.
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Adolescent and young adults with TS have lower TRAQ scores than those without TS.
“Studies have shown adolescent and young adults with TS have lower TRAQ scores than those without TS.544,545”
From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [545]
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- Authors
- Culen, C., Herle, M., Ertl, D., Fröhlich‐Reiterer, E., Blümel, P., Wagner, G., & Häusler, G.
- Affiliations
- Medical University of Vienna (AT)
- Department of Pediatrics and Adolescent Medicine Medical University of Graz Graz Austria
- Kaiser-Franz-Josef-Spital (AT)
- Corresponding author
- Häusler, Gabriele
- Venue
- Clinical Endocrinology
- Publisher
- Wiley
- Published
- 2020-08-14
- Volume
- 93
- Issue
- 4
- Pages
- 449-455
- ISSN
- 0300-0664 (ISSN-L)
- 1365-2265
- PMC
- PMC7540424
- OpenAlex
- W3044898682
- Cited by
- 13
- References
- 42
- Citations by year
- 2025: 1 · 2024: 4 · 2023: 1 · 2022: 4 · 2021: 2 · 2020: 1
- FWCI
- 2.85
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Clinical Endocrinology (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Funders
- Pfizer
- 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
- Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
- Keywords
- Turner syndrome, transition readiness, Transition Readiness Assessment Questionnaire, young women, autonomy, transition to adult care, chronic disease, type 1 diabetes, rheumatic diseases, loss to follow-up
- MeSH terms
- Adolescent, Adult, Aged, Child, Chronic Disease, Diabetes Mellitus, Type 1, Female, Humans, Surveys and Questionnaires, Turner Syndrome, Young Adult, Transition to Adult Care
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