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- Moons, Philip, 1968, et al.
(author)
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Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis.
- 2021
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In: Journal of the American Heart Association. - 2047-9980. ; 10:6
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Journal article (peer-reviewed)abstract
- Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow-up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta-analysis of single proportions was performed according to the DerSimonian-Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%-34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%-58.3%), compared with moderate (25.7%; 95% CI, 15.2%-40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%-29.4%) (P=0.2372). Studies from the United States (34.0%; 95% CI, 24.3%-45.4%), Canada (25.7%; 95% CI, 17.0%-36.7%), and Europe (6.5%; 95% CI, 5.3%-7.9%) differed significantly (P=0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%-42.3%) compared with usual care (36.2%; 95% CI, 22.8%-52.2%) (P=0.1119). Conclusions This meta-analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero. Unique identifier: CRD42020182413.
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| 2. |
- Moons, Philip, 1968, et al.
(author)
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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 Society of Australia and New Zealand (CSANZ), the International Society for Adult Congenital Heart Disease (ISACHD), the World Heart Federation (WHF), the European Congenital Heart Disease Organisation (ECHDO), and the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH)
- 2021
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In: European Heart Journal. - : Oxford University Press (OUP). - 0195-668X .- 1522-9645. ; 42:41, s. 4213-4223
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Journal article (peer-reviewed)abstract
- 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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