Differences in perceptions of transition readiness between parents and teens with congenital heart disease: Do parents and teens agree?

David Harrison, Michelle Gurvitz, Sunkyung Yu, Ray E. Lowery, Katherine Afton, Angela Yetman, Jonathan Cramer, Nancy Rudd, Scott Cohen, Russell Gongwer, Karen Uzark

Research output: Contribution to journalReview articlepeer-review

Abstract

Background: Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness. Methods: Responses were collected from 175 teen-parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit. Results: Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance. Conclusion: Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.

Original languageEnglish (US)
JournalCardiology in the Young
DOIs
StateAccepted/In press - 2021
Externally publishedYes

Keywords

  • Adult congenital heart disease
  • adolescent medicine
  • healthcare transition
  • patient education
  • self-management

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

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