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 Kovacs

Research output: Contribution to journalArticle

15 Citations (Scopus)

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
Externally publishedYes

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Young Adult
Heart Diseases
Transplants
Pediatrics
Cardiology
Population
Equipment and Supplies
Surveys and Questionnaires
Tertiary Healthcare
Self Care
Canada
Observational Studies
Survivors
Cross-Sectional Studies
Mothers
Outcome Assessment (Health Care)
Health

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

Cite this

Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant. / Mackie, Andrew S.; Rempel, Gwen R.; Islam, Sunjidatul; Rankin, Kathryn; Mccurdy, Corinne; Vonder Muhll, Isabelle; Magill-Evans, Joyce; Nicholas, David; Kovacs, Adrienne.

In: Congenital Heart Disease, Vol. 11, No. 2, 01.03.2016, p. 136-143.

Research output: Contribution to journalArticle

Mackie, AS, Rempel, GR, Islam, S, Rankin, K, Mccurdy, C, Vonder Muhll, I, Magill-Evans, J, Nicholas, D & Kovacs, A 2016, 'Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant', Congenital Heart Disease, vol. 11, no. 2, pp. 136-143. https://doi.org/10.1111/chd.12300
Mackie, Andrew S. ; Rempel, Gwen R. ; Islam, Sunjidatul ; Rankin, Kathryn ; Mccurdy, Corinne ; Vonder Muhll, Isabelle ; Magill-Evans, Joyce ; Nicholas, David ; Kovacs, Adrienne. / Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant. In: Congenital Heart Disease. 2016 ; Vol. 11, No. 2. pp. 136-143.
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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.",
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