Maternal-fetal surgery for myelomeningocele longitudinal follow-up model: Mitigation of care fragmentation through care coordination and outcomes reporting.

Abstract

PurposeFollowing the Global Health Symposium at the Spina Bifida World Congress in 2023, the purpose of this work is to provide a historical overview and a state-of-the-art update on the current global practice of myelomeningocele (MMC) closure and to highlight the importance of care coordination and outcomes reporting to mitigate care fragmentation through a multidisciplinary approach.MethodsPanelists from the Spina Bifida World Congress Global Health Symposium reviewed their institutions' history and experience with risk for fragmentation of care following prenatal repair and proposed solutions to address fragmentation of care.ResultsNew and rapidly evolving in-utero approaches to MMC repair are increasingly accessible for patients worldwide but bring more complexity to follow-up care. There is a consensus that unifying multidisciplinary practices and evaluations across institutions and countries will help make care coordination more comprehensive and longitudinal, and that meeting these standards may decrease care fragmentation.ConclusionRegardless of the open spina bifida repair technique, longitudinal follow-up must be established after fetal surgery, not only for the optimal care of individual patients but also to mitigate care fragmentation, transparently evaluate and compare techniques (for example, through the North American Fetal Therapy Network, the National Spina Bifida Patient Registry, etc.), engage health care professionals, and provide evidence-based multidisciplinary care.