Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease—A Randomized Controlled Trial
(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.
(Less)
- author
- organization
- publishing date
- 2023
- 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}}, }