The Scope of Research on Transfer and Transition in Young Persons With Chronic Conditions

Mora, Mariela Acuña; Saarijärvi, Markus; Moons, Philip; Sparud-Lundin, Carina; Bratt, Ewa‐Lena; Goossens, Eva

doi:10.1016/j.jadohealth.2019.07.014

Cited by 28 publications

(20 citation statements)

References 43 publications

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“…To our knowledge, this is the first published study assessing the reach of an RCT evaluating a transition program for adolescents with chronic condition. As evidence on transition programs is scarce [ 60 ], this is an important step in providing evidence on effectiveness. The recruitment for the RCT was based on a register which has high concordance with the medical records, therefore increasing validity [ 61 ].…”

Section: Discussionmentioning

confidence: 99%

Factors affecting adolescents’ participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project

Saarijärvi

Wallin

Moons

et al. 2020

BMC Med Res Methodol

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Background: Recruitment of adolescents to intervention studies is a known challenge. For randomized controlled trials (RCT) to be generalizable, reach must be assessed, which means ascertaining how many of the intended population actually participated in the trial. The aim of this study was to evaluate the reach and representativeness of an RCT evaluating the effectiveness of a complex intervention for adolescents with chronic conditions. Methods: A mixed methods sequential explanatory design was employed. Firstly, quantitative cross-sectional data from the RCT, patient registries and medical records were collected and analysed regarding baseline differences between participants and non-participants in the trial. Secondly, qualitative data on their reasons for participating or not were collected and analysed with content analysis to explain the quantitative findings. Results: Participants showed larger differences in effect sizes and a significantly more complex chronic condition than non-participants. No other statistically significant differences were reported, and effect sizes were negligible. Reasons for declining or accepting participation were categorized into three main categories: altruistic reasons, personal reasons and external reasons and factors. Conclusions: Integration of quantitative and qualitative findings showed that participation in the RCT was affected by disease complexity, the perceived need to give back to healthcare and research and the adolescents' willingness to engage in their illness. To empower adolescents with chronic conditions and motivate them to participate in research, future intervention studies should consider developing tailored recruitment strategies and communications with subgroups that are harder to reach.

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Section: Discussionmentioning

confidence: 99%

Factors affecting adolescents’ participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project

Saarijärvi

Wallin

Moons

et al. 2020

BMC Med Res Methodol

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“…The body of evidence on transfer and transition in adolescents with chronic conditions is extensive. 32 However, the level of evidence is rather low, with only a few studies investigating the effectiveness of transitional care using (quasi)-experimental designs. 32 , 33 Evidence is especially lacking from low- and middle-income countries.…”

Section: Transitional Care: What Does the Evidence Show?mentioning

confidence: 99%

“… 32 However, the level of evidence is rather low, with only a few studies investigating the effectiveness of transitional care using (quasi)-experimental designs. 32 , 33 Evidence is especially lacking from low- and middle-income countries. 32 In CHD, the results of two trials on the effects of transition have been published so far.…”

Section: Transitional Care: What Does the Evidence Show?mentioning

confidence: 99%

“… 32 , 33 Evidence is especially lacking from low- and middle-income countries. 32 In CHD, the results of two trials on the effects of transition have been published so far. The Chapter 1 (Congenital Heart Adolescents Participating in Transition Evaluation Research) study found that a 1-h nurse-led transition intervention resulted in improved self-management and cardiac knowledge.…”

Section: Transitional Care: What Does the Evidence Show?mentioning

confidence: 99%

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Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac So

Moons

Bratt

Backer

et al. 2021

European Heart Journal

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The vast majority of children with congenital heart disease (CHD) in high-income countries survive into adulthood. Further, paediatric cardiac services have expanded in middle-income countries. Both evolutions have resulted in an increasing number of CHD survivors. Expert care across the life span is necessitated. In adolescence, patients transition from being a dependent child to an independent adult. They are also advised to transfer from paediatrics to adult care. There is no universal consensus regarding how transitional care should be provided and how the transfer should be organized. This is even more challenging in countries with low resources. This consensus document describes issues and practices of transition and transfer of adolescents with CHD, accounting for different possibilities in high-, middle-, and low-income countries. Transitional care ought to be provided to all adolescents with CHD, taking into consideration the available resources. When reaching adulthood, patients ought to be transferred to adult care facilities/providers capable of managing their needs, and systems have to be in place to make sure that continuity of high-quality care is ensured after leaving paediatric cardiology.

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“…1 Transition from the paediatric to adult healthcare system is a complex process that requires care to be delivered in a coordinated and uninterrupted manner through the provision of developmentally appropriate and comprehensive services. [1][2][3][4] Challenges in the process of transition occur as a result of the procedural and cultural differences between paediatric and adult healthcare, and the crucial yet turbulent developmental phase of adolescence. [4][5][6] Families speak about the difficulty of terminating the lifelong relationships that have developed with paediatric providers, the challenges of building working relationships in new healthcare settings and the fears that adult professionals lack the knowledge and quality of care provided by their paediatric providers.…”

Section: Introductionmentioning

confidence: 99%

Protocol for developing a healthcare transition intervention for young people with spinal cord injuries using a participatory action research approach

et al. 2021

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IntroductionWhile healthcare transition (HCT) interventions are recognised as an important area in paediatric rehabilitation, there has been limited research focusing on young people with spinal cord injuries (SCI). In this study, researchers will collaborate with young people with SCI and their parents/caregivers to develop, implement and evaluate the feasibility and acceptability of a HCT intervention aimed at supporting young people with SCI during their transition from paediatric to adult healthcare services.Methods and analysisA participatory action research (PAR) approach will be used to co-develop the HCT intervention with young people with SCI aged 14–25 years and their parents/caregivers. Three phases will be conducted to address the five objectives of this study. Phase 1 will use semi-structured interviews to explore young people and parent/caregivers’ experiences of HCT. In Phase 2a, both young people and parent/caregivers will be co-researchers. They will be included in the analysis of the interviews and will be asked to participate in co-design workshops to inform the development of a prototype HCT intervention. In Phase 2b, using focus groups, feedback on the prototype HCT intervention will be collected. In Phase 3, the refined prototype HCT intervention will be implemented, and young people with SCI and parent/caregivers will evaluate the feasibility and acceptability of the HCT intervention in semi-structured interviews. A reference group, including stakeholders and end users, will be consulted at different time points.Ethics and disseminationThe study has received ethics approval from Western Sydney University Human Research and Ethics Committee (H14029). The researcher will use the results of this study as chapters in a thesis to obtain a Doctor of Philosophy degree. The findings will be disseminated via publication in peer-reviewed journals and will be presented at local, national or international conferences.Trial registration numberACTRN12621000500853

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The Scope of Research on Transfer and Transition in Young Persons With Chronic Conditions

Cited by 28 publications

References 43 publications

Factors affecting adolescents’ participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project

Factors affecting adolescents’ participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project

Protocol for developing a healthcare transition intervention for young people with spinal cord injuries using a participatory action research approach

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