Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease-A Randomized Controlled Trial

Ewa-Lena Bratt; Mariela Acuna Mora; Carina Sparud-Lundin; Markus Saarijärvi; Åsa Burström; Sandra Skogby; Eva Fernlund; Shalan Fadl; Annika Rydberg; Katarina Hanseus; Kalliopi Kazamia; Philip Moons

doi:10.1016/j.jadohealth.2023.02.019

Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease-A Randomized Controlled Trial

J Adolesc Health. 2023 Oct;73(4):655-663. doi: 10.1016/j.jadohealth.2023.02.019. Epub 2023 Apr 8.

Authors

Affiliations

¹ Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Region Västra Götaland, Sahlgrenska University Hospital, Children's Heart Center, Gothenburg, Sweden. Electronic address: [email protected].
² Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Academy of Caring Science, Work Life and Social Welfare, University of Borås, Sweden.
³ Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
⁴ Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
⁵ Department of Neurobiology, Care Sciences and Society Karolinska Institutet, Stockholm, Sweden.
⁶ Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Paediatric Cardiology, The Queen Silvia Children's Hospital, Gothenburg, Sweden.
⁷ Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden; Division of Paediatrics, Crown Princess Victoria Childreńs Hospital, Linköping University Hospital, Linköping, Sweden; Department of Clinical Sciences Lund, Lund University, Skåne University Hospital, paediatric Cardiology, Lund, Sweden.
⁸ Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
⁹ Department of Clinical Sciences, Umeå University, Umeå, Sweden.
¹⁰ Children's Heart Centre, Skåne University Hospital Lund, Lund, Sweden.
¹¹ Children's Heart Centre Stockholm-Uppsala, Karolinska University Hospital and Akademiska University Hospital, Sweden; Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
¹² Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; KU Leuven, Department of Public Health and Primary Care, Leuven, Belgium; Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.

PMID: 37032211
DOI: 10.1016/j.jadohealth.2023.02.019

Abstract

Purpose: Adolescents with congenital heart disease transition from childhood to adulthood and transfer from pediatric-oriented to adult-oriented care. High-level empirical evidence on the effectiveness of transitional care is scarce. This study investigated the empowering effect (primary outcome) of a structured person-centered transition program for adolescents with congenital heart disease and studied its effectiveness on transition readiness, patient-reported health, quality of life, health behaviors, disease-related knowledge, and parental outcomes e.g., parental uncertainty, readiness for transition as perceived by the parents (secondary outcomes).

Methods: The STEPSTONES-trial comprised a hybrid experimental design whereby a randomized controlled trial was embedded in a longitudinal observational study. The trial was conducted in seven centers in Sweden. Two centers were allocated to the randomized controlled trial-arm, randomizing participants to intervention or control group. The other five centers were intervention-naïve centers and served as contamination check control group. Outcomes were measured at the age of 16 years (baseline), 17 years, and 18.5 years.

Results: The change in empowerment from 16 years to 18.5 years differed significantly between the intervention group and control group (mean difference = 3.44; 95% confidence interval = 0.27-6.65; p = .036) in favor of intervention group. For the secondary outcomes, significant differences in change over time were found in parental involvement (p = .008), disease-related knowledge (p = .0002), and satisfaction with physical appearance (p = .039). No differences in primary or secondary outcomes were detected between the control group and contamination check control group, indicating that there was no contamination in the control group.

Discussion: The STEPSTONES transition program was effective in increasing patient empowerment, reducing parental involvement, improving satisfaction with physical appearance, and increasing disease-related knowledge.

Trial registration: ClinicalTrials.gov NCT02675361.

Keywords: Adolescents; Congenital; Empowerment; Heart disease; Randomized controlled trial; Transfer; Transition.

Publication types

Randomized Controlled Trial
Observational Study
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Child
Heart Defects, Congenital* / therapy
Humans
Parents
Patient Participation
Quality of Life
Transition to Adult Care*
Young Adult

Associated data

ClinicalTrials.gov/NCT02675361