Healthcare transition for youth with heart disease: a clinical trial.
OBJECTIVE
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.


BACKGROUND
NCT01286480.
Stollery Children's Hospital, Edmonton, Alberta, Canada Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
Andrew S
AS
Mackie
School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
Sunjidatul
S
Islam
Department of Occupational Therapy, University of Alberta, Edmonton, Alberta, Canada.
Joyce
J
Magill-Evans
Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Kathryn N
KN
Rankin
Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Cheri
C
Robert
Stollery Children's Hospital, Edmonton, Alberta, Canada.
Michelle
M
Schuh
Faculty of Social Work, University of Calgary, Calgary, Alberta, Canada.
David
D
Nicholas
Department of Medicine, University of Alberta, Edmonton, Alberta, Canada.
Isabelle
I
Vonder Muhll
Department of Pediatrics, University of Toronto, Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario, Canada.
Brian W
BW
McCrindle
School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
Yutaka
Y
Yasui
Centre for Nursing and Health Studies, Athabasca University, Athabasca, Alberta, Canada.
Gwen R
GR
Rempel
D000293:Adolescent; D009202:Cardiomyopathies / Q000451:nursing* / Q000628:therapy; D016022:Case-Control Studies; D019468:Disease Management; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006330:Heart Defects, Congenital / Q000451:nursing* / Q000628:therapy; D006776:Hospitals, Pediatric; D006801:Humans; D008297:Male; D020380:Needs Assessment; D024802:Nurse's Role; D010353:Patient Education as Topic; D012648:Self Care / Q000379:methods; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care; D016896:Treatment Outcome