title: Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant.
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.
  
  
  METHODS
  The study was designed as a cross-sectional observational study.
  
  
  METHODS
  The study was set at tertiary-care pediatric and adult cardiology clinics in Edmonton and Toronto, Canada.
  
  
  METHODS
  The patients were 18- to 25-year-olds with moderate or complex CHD or a HTx in childhood.
  
  
  METHODS
  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.
authors.affiliation: Division of Cardiology, Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.|Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.|School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Andrew S
authors.identifier: http://orcid.org/0000-0001-6126-1130
authors.initials: AS
authors.lastname: Mackie
authors.affiliation: Faculty of Health Disciplines, Athabasca University, Athabasca, Alberta, Canada.
authors.forename: Gwen R
authors.initials: GR
authors.lastname: Rempel
authors.affiliation: School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Sunjidatul
authors.initials: S
authors.lastname: Islam
authors.affiliation: Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Rankin
authors.affiliation: Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Alberta, Canada.
authors.forename: Corinne
authors.initials: C
authors.lastname: McCurdy
authors.affiliation: Department of Medicine, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Vonder Muhll
authors.affiliation: Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada.
authors.forename: Joyce
authors.initials: J
authors.lastname: Magill-Evans
authors.affiliation: Department of Social Work, University of Calgary, Calgary, Alberta, Canada.
authors.forename: David
authors.initials: D
authors.lastname: Nicholas
authors.affiliation: Peter Munk Cardiac Centre, University Health Network, University of Toronto, Toronto, Alberta, Canada.
authors.forename: Adrienne H
authors.initials: AH
authors.lastname: Kovacs
mesh_terms: D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand / Q000592:standards*; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000523:psychology*; D016027:Heart Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D026684:Personal Autonomy; D011795:Surveys and Questionnaires; D066027:Transplant Recipients / Q000523:psychology*; D055815:Young Adult
keywords: Adult; Congenital Heart Disease; Quality of Life; Transition of Care