Nelson Katherine E, Feinstein James A, Gerhardt Cynthia A, Rosenberg Abby R, Widger Kimberley, Faerber Jennifer A, Feudtner Chris
Pediatric Advanced Care Team, Department of Paediatrics, Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, ON M5T 3M6, Canada.
Children (Basel). 2018 Feb 26;5(3):32. doi: 10.3390/children5030032.
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
鉴于儿科姑息治疗（PPC）广泛关注患有潜在危及生命疾病的儿童及其家庭的身体、情感和精神需求，PPC研究需要创造性的方法。这份由经验丰富的PPC研究人员撰写的手稿描述了我们在各自研究领域中遇到的问题以及我们确定的针对这些问题的新方法。具体而言，我们讨论了以下潜在方法：评估非语言儿童的症状、评估医疗干预措施、识别和处理与多药治疗相关的问题、解决纵向研究中的数据缺失问题、评估PPC干预措施的长期疗效以及监测PPC服务提供中的不公平现象。
