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

Congenit Heart Dis. 2016 Mar-Apr;11(2):136-43. doi: 10.1111/chd.12300. Epub 2015 Oct 8.


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.

Keywords: Adult; Congenital Heart Disease; Quality of Life; Transition of Care.

Publication types

  • Observational Study

MeSH terms

  • Adolescent
  • Adult
  • Cross-Sectional Studies
  • Female
  • Health Services Needs and Demand / standards*
  • Heart Defects, Congenital / diagnosis
  • Heart Defects, Congenital / psychology*
  • Heart Transplantation / psychology*
  • Humans
  • Male
  • Parents / psychology
  • Personal Autonomy*
  • Surveys and Questionnaires*
  • Transplant Recipients / psychology*
  • Young Adult