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

Bratt, Ewa Lena ; Mora, Mariela Acuna ; Sparud-Lundin, Carina ; Saarijärvi, Markus ; Burström, Åsa ; Skogby, Sandra ; Fernlund, Eva LU orcid ; Fadl, Shalan ; Rydberg, Annika and Hanseus, Katarina LU , et al. (2023) In Journal of Adolescent Health 73(4). p.655-663
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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Adolescents, Congenital, Empowerment, Heart disease, Randomized controlled trial, Transfer, Transition
in
Journal of Adolescent Health
volume
73
issue
4
pages
655 - 663
publisher
Elsevier
external identifiers
  • pmid:37032211
  • scopus:85151843438
ISSN
1054-139X
DOI
10.1016/j.jadohealth.2023.02.019
language
English
LU publication?
yes
id
64d13754-498a-476b-a051-31b8508be855
date added to LUP
2023-07-19 14:29:42
date last changed
2024-04-20 00:44:25
@article{64d13754-498a-476b-a051-31b8508be855,
  abstract     = {{<p>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.</p>}},
  author       = {{Bratt, Ewa Lena and Mora, Mariela Acuna and Sparud-Lundin, Carina and Saarijärvi, Markus and Burström, Åsa and Skogby, Sandra and Fernlund, Eva and Fadl, Shalan and Rydberg, Annika and Hanseus, Katarina and Kazamia, Kalliopi and Moons, Philip}},
  issn         = {{1054-139X}},
  keywords     = {{Adolescents; Congenital; Empowerment; Heart disease; Randomized controlled trial; Transfer; Transition}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{655--663}},
  publisher    = {{Elsevier}},
  series       = {{Journal of Adolescent Health}},
  title        = {{Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease—A Randomized Controlled Trial}},
  url          = {{http://dx.doi.org/10.1016/j.jadohealth.2023.02.019}},
  doi          = {{10.1016/j.jadohealth.2023.02.019}},
  volume       = {{73}},
  year         = {{2023}},
}