Readiness for transition to adult care in adolescents and young adults with Turner syndrome.
Turner syndrome
adolescent
continuity of patient care
female
health literacy
transition to adult care
young adult
Journal
Journal of pediatric endocrinology & metabolism : JPEM
ISSN: 2191-0251
Titre abrégé: J Pediatr Endocrinol Metab
Pays: Germany
ID NLM: 9508900
Informations de publication
Date de publication:
25 Sep 2020
25 Sep 2020
Historique:
received:
30
03
2020
accepted:
16
06
2020
pubmed:
1
9
2020
medline:
16
6
2021
entrez:
1
9
2020
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 32866122
doi: 10.1515/jpem-2020-0155
pii: jpem-2020-0155
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1165-1171Références
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