1. Transition Readiness in Teens and Young Adults with Congenital Heart Disease: Can We Make a Difference?
- Author
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Anji T. Yetman, Russell Gongwer, Michelle Gurvitz, Nancy Rudd, Ray Lowery, Jonathan W. Cramer, Sunkyung Yu, Scott Cohen, Katherine Afton, and Karen Uzark
- Subjects
Adult ,Heart Defects, Congenital ,Male ,Gerontology ,Health Knowledge, Attitudes, Practice ,Transition to Adult Care ,Adolescent ,Heart disease ,Information Seeking Behavior ,Cohort Studies ,Young Adult ,Patient Education as Topic ,Quality of life ,medicine ,Humans ,Young adult ,Prospective cohort study ,Self-management ,business.industry ,Self-Management ,Patient Preference ,medicine.disease ,Self Efficacy ,Hospitalization ,Pediatrics, Perinatology and Child Health ,Quality of Life ,Female ,Knowledge deficit ,Emergency Service, Hospital ,business ,Psychosocial ,Patient education - Abstract
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.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.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 patients18 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).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.
- Published
- 2020
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