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

doi:10.1016/j.jpeds.2020.02.040

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

J Pediatr. 2020 Jun:221:201-206.e1. doi: 10.1016/j.jpeds.2020.02.040.

Authors

Affiliations

¹ Department of Pediatrics, University of Michigan Mott Children's Hospital, Ann Arbor, MI; Department of Cardiac Surgery, University of Michigan Mott Children's Hospital, Ann Arbor, MI. Electronic address: karenu@med.umich.edu.
² Department of Pediatrics, University of Michigan Mott Children's Hospital, Ann Arbor, MI.
³ Department of Pediatrics, Children's Hospital and Medical Center, Omaha, NE.
⁴ Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI.
⁵ Department of Pediatrics, Children's Hospital of Wisconsin, Milwaukee, WI; Department of Internal Medicine, Children's Hospital of Wisconsin, Milwaukee, WI.
⁶ Department of Cardiology, Boston Children's Hospital, Boston, MA.

PMID: 32446482
DOI: 10.1016/j.jpeds.2020.02.040

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.

Keywords: adult congenital heart disease; healthcare transition; patient education; quality of life; self-management.

Publication types

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

MeSH terms

Adolescent
Adult
Cohort Studies
Emergency Service, Hospital / statistics & numerical data
Female
Health Knowledge, Attitudes, Practice*
Heart Defects, Congenital / epidemiology*
Hospitalization / statistics & numerical data
Humans
Information Seeking Behavior
Male
Patient Education as Topic
Patient Preference
Quality of Life
Self Efficacy*
Self-Management*
Transition to Adult Care*
Young Adult