Patient-parent perceptions of transition readiness in Turner syndrome and associated factors

Nisha Patel; Brett Klamer; Shanlee Davis; Leena Nahata

doi:10.1111/cen.14584

Patient-parent perceptions of transition readiness in Turner syndrome and associated factors

Clin Endocrinol (Oxf). 2022 Feb;96(2):155-164. doi: 10.1111/cen.14584. Epub 2021 Sep 23.

Authors

Nisha Patel¹, Brett Klamer^{2

3}, Shanlee Davis^{4

5}, Leena Nahata^{1

6}

Affiliations

¹ Department of Pediatrics, Division of Endocrinology, Nationwide Children's Hospital, The Ohio State University College of Medicine, Columbus, Ohio, USA.
² Center for Biostatistics, The Ohio State University College of Medicine, Columbus, Ohio, USA.
³ Biostatistics Resource at Nationwide Children's Hospital (BRANCH), Columbus, Ohio, USA.
⁴ Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA.
⁵ eXtraOrdinary Kids Clinic, Children's Hospital Colorado, Aurora, Colorado, USA.
⁶ Center for Biobehavioral Health, Abigail Wexner Research Institute, Columbus, Ohio, USA.

PMID: 34553783
DOI: 10.1111/cen.14584

Abstract

Objective: Medical care transition to adult care presents challenges for individuals with complex medical conditions such as Turner syndrome (TS). The goals of this study were to: (1) identify factors associated with transition readiness; (2) examine associations and differences between patients' and parents' perceptions of readiness using Transition Readiness Assessment Questionnaire (TRAQ).

Methods: In a prospective cross-sectional study, girls with TS 12-25 years and one parent were recruited from 11/2019 to 12/2020. Three questionnaires were administered (demographic/clinical questionnaire, TRAQ, and TS Transition Readiness Assessment Questionnaire [TS-TRAQ]). Medical records were reviewed for karyotype and personal medical history. Descriptive statistics, Spearman's correlation, paired sample t tests, and linear regression were used to examine readiness and associated factors.

Results: Of 44 eligible patients, 35 patients and 30 parents completed the study. Patient age, education, and life skills were associated with a higher TRAQ score (p < .001). Greater TS knowledge was associated with higher readiness (p < .05). Readiness score for patient and parental perception of patient's readiness were correlated (r = .83; p < .01). Within patient-parent dyads, patients had higher readiness (p < .01). TRAQ and TS-TRAQ scores were correlated (r = .69; p < .01).

Conclusions: Increasing patient age, patient education, life skills, confidence, and higher social/emotional scores were associated with a higher total TRAQ. Patient and parent perceived readiness were correlated and scores within dyads were different. Patients had higher perceived readiness. Positive correlations between TRAQ and TS-TRAQ suggest this tool may be a useful resource. Given the unique neurocognitive profile and social/emotional challenges among girls with TS, future research should include both patients and parents, and focus on validating TS-specific transition readiness tools.

Keywords: TRAQ; Turner syndrome; adolescent; healthcare transition; transition readiness; transition to adult care; young adult.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Cross-Sectional Studies
Female
Humans
Parents
Prospective Studies
Surveys and Questionnaires
Transition to Adult Care*
Turner Syndrome*

Grants and funding

Abigail Wexner Research Institute, Nationwide Children's Hospital