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.

There to here: young adult patients' perceptions of the process of transition from pediatric to adult transplant care.

BACKGROUND: An increased understanding of the transition process from pediatric to adult transplant care may inform strategies for facilitating the transfer of patients and ultimately improve outcomes of care. OBJECTIVE: To explore the transition process from pediatric to adult transplant care from the perspective of young adults. STUDY DESIGN: Using a qualitative case study approach, data were collected from transplant recipients through organ-specific focus groups, from transplant coordinators and nurse practitioners through interviews, and from electronic documents. Data were analyzed using an editorial format. RESULTS: The analysis identified 5 elements of transition: There to Here, Getting Ready, Frame of Mind, Making It Easier, and Giving Back. In addition, threaded throughout the elements were the themes People Are Important, Expectations of Us, and Information We Need. CONCLUSIONS: The transition for young people from a pediatric to an adult transplant center can be difficult and often traumatic. Young adults who transfer to adult care need to be better prepared for the adult center, made aware of the differences, and introduced to team members before the transfer. Transition programs that aim to improve the transition process should be developed for these patients.