Less ready for adulthood?—Turner syndrome has an impact on transition readiness

• Published in: Clinical endocrinology (Oxford) Vol. 93; no. 4; pp. 449 - 455
• Main Authors: Culen, Caroline, Herle, Marion, Ertl, Diana‐Alexandra, Fröhlich‐Reiterer, Elke, Blümel, Peter, Wagner, Gudrun, Häusler, Gabriele
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01-10-2020; John Wiley and Sons Inc
• Subjects: Adolescent; adolescent health; Adult; Aged; assessment questionnaire; Autonomy; Child; Chronic Disease; Chronic illnesses; Cognition; Diabetes mellitus (insulin dependent); Diabetes Mellitus, Type 1; Female; Genetic disorders; health autonomy; healthcare transition; Humans; Original; ORIGINAL ARTICLES; Questionnaires; Surveys and Questionnaires; Teenagers; Transition to Adult Care; TRAQ; Turner Syndrome; Turner's syndrome; Young Adult; chronic disease; adolescent health; assessment questionnaire; TRAQ; Turner syndrome; health autonomy; healthcare transition
• ISSN: 0300-0664; 1365-2265
• DOI: 10.1111/cen.14293

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.