Foster Carolyn, Lin Elaine, Feinstein James A, Seltzer Rebecca, Graham Robert J, Coleman Cara, Ward Erin, Coller Ryan J, Sobotka Sarah, Berry Jay G
Division of Advanced General Pediatrics and Primary Care, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
Mary Ann & J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
Pediatrics. 2025 Feb 1;155(2). doi: 10.1542/peds.2024-067966.
Pediatric home health care represents a vital system of care for children with disability and medical complexity, encompassing services provided by family caregivers and nonfamily home health care providers and the use of durable medical equipment and supplies. Home health care is medically necessary for the physiologic health of children with disability and medical complexity and for their participation and function within home, school, and community settings. While the study of pediatric home health care in the United States has increased in the last decade, its research remains primarily methodologically limited to observational studies. Dedicated funding and research efforts are needed to transform American home health care research to address multifaceted outcomes valued by families and providers as well as payers and government programs. In this paper, we review the recent literature in pediatric home health care and then propose an actional agenda that could address its missing evidence base. We posit that pediatricians should partner with family caregiving experts and patients to advance knowledge about child and family health outcomes, home health care use, new models of care, and optimal approaches to education and training while also considering meaningful approaches to address disparities. The creation of an American pediatric home health care data-sharing consortium, patient registry, and reproducible access and quality measures is also needed. Most importantly, efforts should center on patient- and family-centered health priorities, with the goal of ensuring equitable outcomes for every child and family.
儿科家庭医疗保健是为残疾和医疗情况复杂的儿童提供的重要护理体系，涵盖家庭护理人员和非家庭家庭医疗保健提供者提供的服务，以及耐用医疗设备和用品的使用。家庭医疗保健对于残疾和医疗情况复杂的儿童的生理健康以及他们在家庭、学校和社区环境中的参与和功能而言在医学上是必要的。虽然在过去十年中，美国对儿科家庭医疗保健的研究有所增加，但其研究在方法上仍主要局限于观察性研究。需要专门的资金和研究努力，以转变美国的家庭医疗保健研究，从而解决家庭、提供者以及支付方和政府项目所重视的多方面结果。在本文中，我们回顾了儿科家庭医疗保健的近期文献，然后提出了一个行动议程，该议程可以解决其缺失的证据基础问题。我们认为，儿科医生应与家庭护理专家和患者合作，以推进关于儿童和家庭健康结果、家庭医疗保健使用、新的护理模式以及教育和培训的最佳方法的知识，同时还要考虑解决差异的有意义方法。还需要创建一个美国儿科家庭医疗保健数据共享联盟、患者登记册以及可重复使用的获取和质量衡量标准。最重要的是，努力应围绕以患者和家庭为中心的健康优先事项展开，目标是确保每个儿童和家庭都能获得公平的结果。
