Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant.

OBJECTIVE: The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their health. Accordingly, we sought to assess psychosocial maturity and validity of the Transition Readiness Assessment Questionnaire (TRAQ) in this population. DESIGN: The study was designed as a cross-sectional observational study. SETTING: The study was set at tertiary-care pediatric and adult cardiology clinics in Edmonton and Toronto, Canada. PATIENTS: The patients were 18- to 25-year-olds with moderate or complex CHD or a HTx in childhood. OUTCOME MEASURES: Participants completed validated instruments including the TRAQ, Erickson's Psychosocial Stage Inventory (EPSI), and Kenny's Parental Attachment Questionnaire (PAQ). RESULTS: We enrolled 188 participants (41% women), 109 (58%) having moderate CHD, 64 (34%) complex CHD, and 15 (8%) with a HTx. Mean age for those followed in a pediatric clinic was 21.3 ± 2.3 years, compared with 21.8 ± 2.3 years for those attending an adult clinic (P = 0.20). All questionnaire scores were similar among participants with moderate CHD vs. complex CHD vs. an HTx, and among participants followed in a pediatric clinic vs. an adult clinic. EPSI and PAQ scores were similar to those of healthy populations, though perception of maternal overprotection was common. TRAQ scores increased with age. A response of "not needed for my care" to 5 or more of the 29 TRAQ items was provided by 110 (75%) participants. CONCLUSIONS: Age, but not disease severity should be a factor when considering the transition needs of young adults with heart disease. The TRAQ has important limitations in the adult CHD/HTx population and a cardiac-specific measure of transition readiness is needed.