Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.
Margolis Center for Health Policy, Duke University, Durham, NC, USA.
J Child Neurol. 2020 Sep;35(10):681-689. doi: 10.1177/0883073820923809. Epub 2020 Jun 4.
Health-related quality of life (HRQOL) is central to how clinicians and parents make choices about medical care for pediatric neurology patients. To provide parents with the information they need to make these decisions and plan for the future, it is necessary for parents and clinicians to understand how HRQOL is defined and measured in the setting of pediatric neurodevelopmental impairment. We review challenges that exist in measuring HRQOL in pediatric neurology, examine existing measures, and outline key principles to guide selection and interpretation of HRQOL measures in children with neurologic conditions.
健康相关生活质量（HRQOL）是临床医生和家长为儿科神经科患者选择医疗护理的核心。为了向家长提供做出这些决策和规划未来所需的信息，家长和临床医生必须了解在儿科神经发育障碍的情况下如何定义和衡量 HRQOL。我们回顾了在儿科神经病学中衡量 HRQOL 所存在的挑战，考察了现有的衡量方法，并概述了指导神经状况儿童选择和解释 HRQOL 衡量方法的关键原则。
