Transition Readiness in Teens and Young Adults with Congenital Heart Disease: Can We Make a Difference?

Karen Uzark, Sunkyung Yu, Ray Lowery, Katherine Afton, Anji T. Yetman, Jonathan Cramer, Nancy Rudd, Scott Cohen, Russell Gongwer, Michelle Gurvitz

Research output: Contribution to journalArticlepeer-review

Abstract

Objectives: To examine changes in transition readiness (knowledge, self-efficacy, self-management) over time and explore factors associated with transition readiness, including psychosocial quality of life (QOL) and health service utilization in teens/young adults with congenital heart disease. Study design: In a multicenter prospective cohort study, 356 patients, age 14-27 years, completed transition readiness and QOL assessments at routine cardiology visits at baseline and 1-year follow-up. Results: Median patient age was 19.8 years at 1.03 years (IQR 0.98-1.24) following baseline transition readiness assessment. Average knowledge deficit scores decreased at follow-up (P < .0001) and self-efficacy scores increased (P < .0001). Self-management scores increased (P < .0001), but remained low (mean 57.7, 100-point scale). Information was requested by 73% of patients at baseline and was associated with greater increase in knowledge at follow-up (P = .005). Increased knowledge (P = .003) and perceived self-efficacy (P = .01) were associated with improved psychosocial QOL, but not health service utilization at follow-up. Patients who preferred face-to-face information from healthcare providers (47%) vs other information sources were more likely to request information (P < .0001). In patients <18 years old, greater agreement between teen and parental perception of teen's knowledge was associated with greater increase in patient knowledge (P = .02) and self-efficacy (P = .003). Conclusion: Transition readiness assessment demonstrated improved knowledge, self-efficacy, and self-management at 1-year follow-up in teens/young adults with congenital heart disease. Improved knowledge and self-efficacy were associated with improved psychosocial QOL. Self-management remained low. Supplemental media for conveying information and greater involvement of parents may be needed to optimize transition readiness.

Original languageEnglish (US)
Pages (from-to)201-206.e1
JournalJournal of Pediatrics
Volume221
DOIs
StatePublished - Jun 2020

Keywords

  • adult congenital heart disease
  • healthcare transition
  • patient education
  • quality of life
  • self-management

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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