Long-Term Outcomes After Mechanical Circulatory Support in Children
Mechanical circulatory support (ECMO or ventricular assist devices) may be necessary for infants, children, and adolescents with heart failure, whether the setting is acute or chronic. Survival has improved substantially, but survival is not the same as a good outcome: in one recent cohort, three-quarters of children who received a VAD before 15 months of age had a non-optimal neurodevelopmental outcome by age 2, and two-thirds of those implanted before age 6 remained non-optimal at age 6. Current guidelines, including a recent American Heart Association statement, now classify children who have undergone heart transplant or VAD support as a "high-risk" category requiring prompt referral for developmental intervention — yet a recent multicenter survey found that only 28.8% of centers in a major pediatric MCS network had a consistent, structured approach to supporting early development, with nearly half relying on individual clinicians to decide whether a child should be referred at all.Neurological and developmental follow-up care for children after MCS is therefore not yet systematic in most settings, despite guideline recommendations to establish it. The gap is not a lack of consensus that follow-up matters — it is a lack of published models for how to build it: which test instruments to use, who should administer them, how to fund and staff a program, and how to adapt it to local resources and family circumstances. Studies that address the implementation of a follow-up program, the professions involved, the role of parents and guardians, and financing concepts help close that gap between guideline and practice.This Research Topic aims to provide transparency and guidance for the implementation of structured follow-up programs, as well as offer an overview of the neurological and developmental outcomes for children after mechanical circulatory support. This may include psychological, cognitive or motor ability, as well as the child’s development, activities of daily living and quality of life. The influence of the underlying disease, the mechanical circulatory support, the sociodemographic background, as well as the resources of the hospital or country and the follow-up structure on the outcomes should be investigated.To help close the gap between theoretical recommendations and practical implementation, we welcome articles covering, but not limited to, the following themes:• Long-term neurological, developmental, cognitive, and psychological outcomes in infants, children, and adolescents after mechanical circulatory support for heart failure;• Design, implementation, and evaluation of structured follow-up programs for pediatric MCS patients, adapted to local healthcare systems and cultural contexts;• Selection, validation, and practical use of suitable neurological, developmental, and psychosocial assessment instruments in follow-up care after MCS;• Approaches to multidisciplinary teamwork in follow-up care for pediatric MCS patients, including clarification of roles and responsibilities of different professional groups;• The role and involvement of parents, guardians, and caregivers in follow-up care and outcome assessment after MCS;• Strategies and concepts for the financial and organizational sustainability of pediatric MCS follow-up programs;• Case studies, protocols, or frameworks for implementing structured follow-up after pediatric mechanical circulatory support across different healthcare systems and countries.We welcome Original Research, Brief Research Reports, Clinical Trials, Study Protocols, Systematic Reviews, and Implementation Science articles that enhance our understanding of long-term outcomes and the practical establishment of follow-up programs for children after mechanical circulatory support.Through this Research Topic, we aim to support the improvement of patient care and advocacy for comprehensive, individualized follow-up, ultimately advancing neurological, developmental, and quality of life outcomes for this unique population. Topic editors: Katharina Schmitt, Hannes Sallmon, Franziska Markel, Stephan Schubert Source: https://www.frontiersin.org/research-topics/74627/long-term-outcomes-after-mechanical-circulatory-support-in-children
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