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

Andrew S. Mackie, Gwen R. Rempel, Sunjidatul Islam, Kathryn Rankin, Corinne Mccurdy, Isabelle Vonder Muhll, Joyce Magill-Evans, David Nicholas, Adrienne H. Kovacs

Research output: Contribution to journalArticle

18 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)136-143
Number of pages8
JournalCongenital Heart Disease
Volume11
Issue number2
DOIs
StatePublished - Mar 1 2016

Keywords

  • Adult
  • Congenital Heart Disease
  • Quality of Life
  • Transition of Care

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Surgery
  • Radiology Nuclear Medicine and imaging
  • Cardiology and Cardiovascular Medicine

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    Mackie, A. S., Rempel, G. R., Islam, S., Rankin, K., Mccurdy, C., Vonder Muhll, I., Magill-Evans, J., Nicholas, D., & Kovacs, A. H. (2016). Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant. Congenital Heart Disease, 11(2), 136-143. https://doi.org/10.1111/chd.12300