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Healthcare transition for youth with heart disease: a clinical trial
  1. Andrew S Mackie1,2,3,
  2. Sunjidatul Islam3,
  3. Joyce Magill-Evans4,
  4. Kathryn N Rankin2,
  5. Cheri Robert2,
  6. Michelle Schuh1,
  7. David Nicholas5,
  8. Isabelle Vonder Muhll6,
  9. Brian W McCrindle7,
  10. Yutaka Yasui3,
  11. Gwen R Rempel8
  1. 1Stollery Children's Hospital, Edmonton, Alberta, Canada
  2. 2Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
  3. 3School of Public Health, University of Alberta, Edmonton, Alberta, Canada
  4. 4Department of Occupational Therapy, University of Alberta, Edmonton, Alberta, Canada
  5. 5Faculty of Social Work, University of Calgary, Calgary, Alberta, Canada
  6. 6Department of Medicine, University of Alberta, Edmonton, Alberta, Canada
  7. 7Department of Pediatrics, University of Toronto, Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario, Canada
  8. 8Centre for Nursing and Health Studies, Athabasca University, Athabasca, Alberta, Canada
  1. Correspondence to Dr Andrew S Mackie, Division of Cardiology, Stollery Children's Hospital, 8440-112th St. NW, Edmonton, AB, Canada T6G 2B7; andrew.mackie{at}


Objectives Adolescents with heart disease have complex health needs and require lifelong cardiology follow-up. Interventions to facilitate paediatric to adult healthcare transition are recommended, although outcomes are unknown. We sought to determine the impact of a transition intervention on improving knowledge and self-management skills among this population.

Methods We conducted a clinical trial of 15–17 year olds with moderate or complex congenital heart disease (CHD) or cardiomyopathy. Participants were systematically allocated to either usual care (controls) or a 1 h nurse-led one-on-one teaching session about their heart. Allocation was determined by week of attendance in the cardiology clinic. The primary outcome was change in Transition Readiness Assessment Questionnaire (TRAQ) score at 6 months, possible scores ranging from 1 (low) to 5 (optimal). Cardiac knowledge (MyHeart score, range 0–100) was a secondary outcome. Analysis was intention to treat.

Results Of 58 participants (48% female), 52 had CHD and 6 had cardiomyopathy. 27 were allocated to the intervention group; 3 declined the intervention and received usual care. When comparing the intervention group with the usual care group at 6 months postintervention, the mean self-management TRAQ score was 3.59 (±0.83) vs 3.16 (±1.05), respectively (p=0.048, adjusted for baseline score); the mean self-advocacy TRAQ score was 4.38 (±0.56) vs 4.01 (±0.95) (p=0.18) and the mean MyHeart score was 75% (±15) vs 61% (±25) (p=0.019).

Conclusions A 1 h nurse-led transition intervention resulted in a significant improvement in self-management and cardiac knowledge scores. An educational intervention should be routine for youth with congenital or acquired heart disease.

Trial registration number NCT01286480

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