Healthcare transition for youth with heart disease: a clinical trial

Heart. 2014 Jul;100(14):1113-8. doi: 10.1136/heartjnl-2014-305748. Epub 2014 May 19.

Abstract

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.

Publication types

  • Controlled Clinical Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Cardiomyopathies / nursing*
  • Cardiomyopathies / therapy
  • Case-Control Studies
  • Disease Management
  • Female
  • Follow-Up Studies
  • Health Knowledge, Attitudes, Practice*
  • Health Services Needs and Demand
  • Heart Defects, Congenital / nursing*
  • Heart Defects, Congenital / therapy
  • Hospitals, Pediatric
  • Humans
  • Male
  • Needs Assessment
  • Nurse's Role
  • Patient Education as Topic*
  • Self Care* / methods
  • Surveys and Questionnaires
  • Transition to Adult Care*
  • Treatment Outcome

Associated data

  • ClinicalTrials.gov/NCT01286480