Transition Preparation for Young Adolescents with Congenital Heart Disease: A Clinical Trial

Mackie, Andrew S.; Rankin, Kathryn N.; Yaskina, Maryna; Gingrich, J; Williams, Elina; Schuh, Michelle; Kovacs, Adrienne H.; McCrindle, Brian W.; Nicholas, David; Rempel, Gwen R.

doi:10.1016/j.jpeds.2021.09.053

Cited by 12 publications

(21 citation statements)

References 19 publications

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“…One study was published in 2014, 19 one in 2015, 20 one in 2017, 21 two in 2018, 22,23 one in 2019, 24 one in 2020, 25 one in 2021, 26 and two in 2022. 27,28 Three studies each were performed in the USA, 22,25,26 Canada, 19,23,28 and South Korea, 21,24,27 while one study was conducted in Belgium 20 (Table 2).…”

Section: Resultsmentioning

confidence: 99%

“…The samples in the 10 studies totaled 1,297 individuals, with a mean age ranging from 13 to 25 years (i.e., adolescents and young adults). If individuals aged 18 and above are classified as young adults, 6 there were three studies targeting adolescents, 19,23,28 one study targeting young, 24 and six studies that broadly encompassed both adolescents and young adults (Table 2). 20–22,25–27…”

Section: Resultsmentioning

confidence: 99%

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Effects of transition programs to adulthood for adolescents and young adults with congenital heart disease: a systematic review with meta-analysis

Lee,

Koo,

Lee

2023

Preprint

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BACKGROUNDThe increased survival rate among individuals with congenital heart disease (CHD) has sparked interest in their transition to adult healthcare. Although there is a general agreement on the importance of transition interventions, the empirical evidence supporting them is insufficient. Therefore, this study aimed to conduct a systematic review and meta-analysis of transition interventions for adult healthcare in adolescents and young adults.METHODS AND RESULTSA literature search was conducted for studies comparing the quantitative effects of transition interventions with control groups, published up to March 15, 2023, in major databases (CENTRAL, Embase, PubMed, Web of Science, CINAHL, KISS, and KMbase), major clinical trial registers, academic journal sites related to the topic, and grey literature databases. Ten studies involving a total of 1,297 participants were identified. Transition interventions proved effective in enhancing disease-related knowledge (Hedge’s g=0.89, 95% CI=0.29-1.48) and self-management (Hedge’s g=0.67, 95% CI=0.38-0.95), as well as reducing loss to follow-up (OR=0.41, 95% CI=0.22-0.77). The certainty of evidence for the estimated values of each major outcome was low or very low.CONCLUSIONSThis study supports the implementation of transition interventions by demonstrating that they can improve patients’ disease knowledge and self-management, while also promoting treatment continuity. However, since the available data on transition interventions for adolescents and young adults with CHD remain limited, the widespread adoption of structured transition interventions in the future may alter the conclusions of this study.REGISTRATIONURL:https://www.crd.york.ac.uk/PROSPERO. Unique identifier: CRD42023399026.CLINICAL PERSPECTIVEWhat Is New?This systematic review of transition programs for individuals of transitional age with congenital heart disease identified 10 relevant studies.Transition programs for adolescents and young adults with congenital heart disease were primarily designed to provide individual education, supplement roles related to anatomical and hemodynamic considerations, manage medications and medical appointments and facilitate communication with healthcare providers.The transition programs demonstrated efficacy in enhancing disease-related knowledge and self-management, as well as in reducing instances of loss to follow-up. However, they did not significantly improve disease-related quality of life.What Are the Clinical Implications?Given the ethical and practical considerations that arise from country-specific conditions and environments, research on congenital heart disease transition programs should utilize a feasible study design that incorporates a control group.Transition programs should address lifestyle factors that can enhance heart function and alleviate clinical symptoms. After promoting long-term commitment to these programs, it is necessary to assess the effects on disease-related quality of life.An execution of a transition program that takes into account the developmental characteristics of the target age group, as well as a transition program involving parents, is necessary. Subsequently, an analysis of the effects of these programs is also required.As a result of the transition program, it is necessary to measure and analyze not only process indicators but also outcome indicators that directly reflect an individual’s health (e.g. emergency room visits, hospital admissions, and the status of disease or complications).

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Effects of transition programs to adulthood for adolescents and young adults with congenital heart disease: a systematic review with meta-analysis

Lee,

Koo,

Lee

2023

Preprint

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“…Nevertheless, the TRAQ has its own limitations, for example, in measuring self-advocacy [ 79 ]. The TRANSITION-Q is another questionnaire with 14 items to be tested to verify the efficacy of the proposed structured transitional intervention [ 80 , 81 ]. The higher the score in the questionnaires, the higher the likelihood of a smooth transition.…”

Section: Discussionmentioning

confidence: 99%

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

et al. 2023

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The majority of patients born with congenital heart disease (CHD) need lifelong surveillance with serial clinical attendance and examinations. However, loss of follow-up (namely no documented follow-up for 3 years or more) is a recognised common problem since it is often related to remarkable worsening in the health of CHD patients with increased morbidity and mortality. Transitioning from paediatric to adult care has proven to be the most vulnerable point in the care of these subjects. As such, a systematic review was carried out to ask the following questions: What is the percentage of loss of follow-up worldwide? Are there regional fluctuations in the percentage? Is there a link between loss of follow-up and the complexity of CHD? What strategies should be employed to lower the risk of discontinuity in care? The most recent worldwide averaged loss of follow-up is 26.1%, with significant fluctuations across continents and countries. This percentage is even higher (31.9%) when one includes all untraceable patients, presuming that they are not having any cardiac follow-up. The highest discontinuity of care was reported in the USA and in patients with simple CHD. Planning the rules of transition seems to be one of the most reliable tools to minimise the number of CHD patients who are lost in transition. Recalling patients, with general practitioners who are crucial in readdressing half of the lost to follow-up CHD patients to adult CHD specialists, and a good relationship between paediatric cardiologists and the adult CHD team are two other valuable strategies in aiding successful transition.

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“…Whilst there are a number of papers examining the impact of specific transitional care interventions, there are only two published trials currently available. 25,26 Both studies demonstrate the positive impact of nurse-led transition sessions on self-management skills and cardiac knowledge. However, more data are emerging.…”

Section: Evidence For Transitionmentioning

confidence: 97%

“…However, specific evidence to support the effectiveness of transition programmes from CHD to ACHD services is limited. Whilst there are a number of papers examining the impact of specific transitional care interventions, there are only two published trials currently available 25,26 . Both studies demonstrate the positive impact of nurse‐led transition sessions on self‐management skills and cardiac knowledge.…”

Section: Evidence For Transitionmentioning

confidence: 99%

Emerging adulthood: The ageing problem of congenital heart disease

Lotto

Thomet

2022

Nursing in Critical Care

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Transition Preparation for Young Adolescents with Congenital Heart Disease: A Clinical Trial

Cited by 12 publications

References 19 publications

Effects of transition programs to adulthood for adolescents and young adults with congenital heart disease: a systematic review with meta-analysis

Effects of transition programs to adulthood for adolescents and young adults with congenital heart disease: a systematic review with meta-analysis

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

Emerging adulthood: The ageing problem of congenital heart disease

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