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

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

doi:10.1016/j.jadohealth.2023.02.019

Cited by 12 publications

(6 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Researchers, practitioners, and policymakers can leverage these conceptual relationships to develop interventions that address the complexity of person-environment interactions through multidimensional approaches, rather than targeting isolated factors. Complex interventions, comprising multiple interacting components, addressing various organizational levels, and necessitating behaviour change among participants and intervention providers, have proven beneficial for supporting transitions in young people with other long-term conditions, 30 and should be explored for young people with CP as well.…”

Section: Discussionmentioning

confidence: 99%

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels

Fortune,

Ryan,

Walsh

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

AimTo explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers.MethodThis study followed a qualitative descriptive approach. Semi‐structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem.ResultsLimited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider–family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges.InterpretationTransition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi‐level response is required, taking into account the interactions among individuals, services, and systems.

show abstract

Section: Discussionmentioning

confidence: 99%

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels

Fortune,

Ryan,

Walsh

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

show abstract

“…Indeed, improvements were observed in all domains commonly targeted by patient education in cardiac rehabilitation: control of cardiovascular risk factors, by lowering blood pressure and BMI 66 ; maintenance of physical activity beyond the intervention 34 ; and promotion of patient autonomy by improving disease knowledge. 33 The educational component of the rehabilitation programme was based on a pre-existing transition programme dedicated to adolescents and young adults with CHD. 31 , 43 These results are supported by the STEPSTONES randomized controlled trial, which recently demonstrated the effectiveness of a structured patient education transition programme 32 in increasing empowerment in adolescents with CHD.…”

Section: Discussionmentioning

confidence: 99%

“… 31 , 43 These results are supported by the STEPSTONES randomized controlled trial, which recently demonstrated the effectiveness of a structured patient education transition programme 32 in increasing empowerment in adolescents with CHD. 33 …”

Section: Discussionmentioning

confidence: 99%

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Amedro,

Gavotto,

Huguet

et al. 2024

European Heart Journal

View full text Add to dashboard Cite

Background and Aims Cardiopulmonary fitness in congenital heart disease (CHD) decreases faster than in the general population resulting in impaired health-related quality of life (HRQoL). As the standard of care seems insufficient to encourage and maintain fitness, an early hybrid cardiac rehabilitation programme could improve HRQoL in CHD. Methods The QUALIREHAB multicentre, randomized, controlled trial evaluated and implemented a 12-week centre- and home-based hybrid cardiac rehabilitation programme, including multidisciplinary care and physical activity sessions. Adolescent and young adult CHD patients with impaired cardiopulmonary fitness were randomly assigned to either the intervention (i.e. cardiac rehabilitation) or the standard of care. The primary outcome was the change in HRQoL from baseline to 12-month follow-up in an intention-to-treat analysis. The secondary outcomes were the change in cardiovascular parameters, cardiopulmonary fitness, and mental health. Results The expected number of 142 patients was enroled in the study (mean age 17.4 ± 3.4 years, 52% female). Patients assigned to the intervention had a significant positive change in HRQoL total score [mean difference 3.8; 95% confidence interval (CI) 0.2; 7.3; P = .038; effect size 0.34], body mass index [mean difference −0.7 kg/m2 (95% CI −1.3; −0.1); P = .022; effect size 0.41], level of physical activity [mean difference 2.5 (95% CI 0.1; 5); P = .044; effect size 0.39], and disease knowledge [mean difference 2.7 (95% CI 0.8; 4.6); P = .007; effect size 0.51]. The per-protocol analysis confirmed these results with a higher magnitude of differences. Acceptability, safety, and short-time effect of the intervention were good to excellent. Conclusions This early hybrid cardiac rehabilitation programme improved HRQoL, body mass index, physical activity, and disease knowledge, in youth with CHD, opening up the possibility for the QUALIREHAB programme to be rolled out to the adult population of CHD and non-congenital cardiac disease.

show abstract

“…In the field of CHD, Mackie et al (2022) showed the benefit of a 1-h nurse led transition intervention on transition readiness and CHD knowledge in adolescents aged 13 to 14 years [ 21 ]. Meanwhile, data from the Stepstones project, has been published [ 22 ]. The RCT project was effective in implementing a person-centred transition programme for adolescents with CHD aged 16–18.5 years.…”

Section: Introductionmentioning

confidence: 99%

Development of quality indicators of transfer and transition in adolescents and young adults with congenital heart disease

Thomet,

Moons,

Schwerzmann

et al. 2023

BMC Health Serv Res

Self Cite

View full text Add to dashboard Cite

Background Quality indicators are crucial in evaluating and comparing the quality of healthcare services. In the case of congenital heart disease, transition programmes for adolescents have been recommended to ensure uninterrupted healthcare and lifelong care. It is necessary to establish quality indicators in order to facilitate the evaluation of programme quality and to allow comparison between different centres. The objective of this study is therefore to develop a set of quality indicators for the transition of adolescents with congenital heart disease. Methods The RAND/UCLA appropriateness method was employed in a four-step process to develop a set of quality indicators. First, a literature search was conducted on the dimensions of transitional care, based on which a preliminary set of quality indicators was developed. Second, experts were contacted, and an expert panel was established. Third, the panel members were asked to rate the appropriateness of the quality indicators in a two-round process. Finally, in the fourth step, we evaluated the data by measuring the median and Disagreement Index. Results The expert panel consisted of 16 members, congenital cardiologists, nurses, transition experts, patients and research experts. The preliminary set of quality indicators comprised 16 items, categorized in process and structure criteria. Based on the panel’s feedback, the set was refined to 12 quality indicators, which were rated as relevant and feasible. Conclusions This study represents the first attempt to develop quality indicators for transitional care services for adolescents with congenital heart disease. The set of 12 quality indicators was developed based on existing evidence and expert opinion. Further testing is needed to assess the feasibility of these quality indicators in daily practice. If successfully implemented, these quality indicators could allow comparison and facilitate benchmarking of transitional care services for adolescents with congenital heart disease.

show abstract

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

Cited by 12 publications

References 29 publications

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels

Early hybrid cardiac rehabilitation in congenital heart disease: the QUALIREHAB trial

Development of quality indicators of transfer and transition in adolescents and young adults with congenital heart disease

Contact Info

Product

Resources

About