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Cited by 11Adolescent and Pediatric HealthcareEthics and Legal Issues in Pediatric HealthcareHospital Admissions and Outcomes

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

Patel, Nisha, Klamer, Brett, Davis, Shanlee, Nahata, Leena·2022·Clinical Endocrinology
DOI 10.1111/cen.14584
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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.

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  • Research in TS and other conditions has shown conflicting readiness scores reported by patients versus caregivers.

    “Additionally, perspectives of transition readiness may differ across informants—specifically, research in TS and other conditions has shown conflicting readiness scores reported by patients versus caregivers, and it is not clear how clinicians should address these discrepancies.537,546”

    From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [546]

  • The Endocrine Society TS-specific transition tool has been used in clinical research but has not yet been validated.

    “Another tool that has been used in clinical research but not yet validated is the TS-specific transition tool provided by the Endocrine Society (Table S8), which includes 10 questions about health, 16 about using health care, and 15 focused on social and emotional factors salient to TS.546”

    From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [546]

  • Perspectives of AYA with TS and their caregivers often differ regarding readiness for independence, with TS individuals reporting a much higher readiness than their caregivers.

    “Additionally, perspectives of AYA with TS and their caregivers often differ regarding readiness for independence, with TS individuals reporting a much higher readiness than their caregivers.546”

    From Clinical practice guidelines for the care of girls and women with Turner syndrome. (2024) · cites this paper as [546]

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Authors
Patel, N., Klamer, B., Davis, S., & Nahata, L.
Affiliations
  • Nationwide Children's Hospital (US)
  • Children's Hospital Colorado (US)
Corresponding author
Patel, Nisha
ORCID
Venue
Clinical Endocrinology
Publisher
Wiley
Published
2021-09-23
Volume
96
Issue
2
Pages
155-164
ISSN
  • 0300-0664 (ISSN-L)
  • 1365-2265
DOI
10.1111/cen.14584
OpenAlex
W3200375051
Cited by
11
References
34
Citations by year
2025: 5 · 2024: 3 · 2023: 1 · 2022: 2
FWCI
1.86
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Clinical Endocrinology (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
  • Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
Keywords
Turner syndrome, transition readiness, parental attitudes, patient perspectives, Transition Readiness Assessment Questionnaire, patient age, patient education, life skills, social-emotional functioning, karyotype
MeSH terms
Adult, Cross-Sectional Studies, Female, Humans, Parents, Prospective Studies, Surveys and Questionnaires, Turner Syndrome, Transition to Adult Care

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