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.
Funding source: Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center
Funding source: National Center for Advancing Translational Sciences of the National Institutes of Health
Award Identifier / Grant number: UL1TR000077
Research funding: This study was supported in part by internal funds from the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center and by the National Center for Advancing Translational Sciences of the National Institutes of Health, under Award Number UL1TR000077.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Competing interests: The funding organizations played no role in the study design, in the collection, analysis or interpretation of data, in the writing of the report, or in the decision to submit the report for publication. The authors have no conflicts of interest to declare.
Informed consent: Informed consent was obtained from all individuals included in this study.
Ethical approval: Institutional review board approval was obtained for this study. Each eligible participant was given information about the study, and consent (>18 years of age) or consent and assent (<18 years of age) were obtained.
Data Availability: The data that support the findings of this study are available from the corresponding author upon reasonable request.
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