RTI International, Division of Biostatistics and Epidemiology, 6110 Executive Boulevard, Rockville, MD 20852, USA.
Children's National Health System, Center for Neuroscience, 111 Michigan Avenue NW, Washington, DC 10010, USA.
Epilepsy Behav. 2019 Mar;92:256-259. doi: 10.1016/j.yebeh.2019.01.009. Epub 2019 Feb 4.
Several American Academy of Neurology (AAN) epilepsy practice guidelines recommend conversations that neurologists should have with patients and their parents. We sought to determine whether parents of pediatric patients with epilepsy had knowledge of epilepsy quality measures (EQMs) and whether they recalled having discussions with their child's neurologist about each of the EQM. Surveys were distributed to parents at five clinic sites associated with epilepsy centers in Washington, DC and Charlottesville, Virginia. Key questions on the parent survey included whether neurologists had discussed, or parents had knowledge of, EQM topics which included medication side effects, safety, reproductive health, transition to adult care, learning and attention problems, bone health, sudden unexpected death in epilepsy (SUDEP), and risk of epilepsy-related death. No data were collected from the neurologist or the medical record about EQM discussions. Among 233 completed surveys, parental knowledge and neurologist discussion of EQM were highly correlated (p < .00001). Epilepsy quality measures most discussed with high parental knowledge were medication side effects, safety, learning and attention problems, and bone health. Sudden unexpected death in epilepsy was least discussed and known. We found consistent care practices in adherence to EQM across settings from urban to rural communities, with patients of all ages and epilepsy severities and staffed by neurologists with various levels of epilepsy expertise. Despite reported high rates of adherence on several measures, we identified opportunities for improvement. Querying and counseling about EQM should be an ongoing conversation which evolves with the child's age and epilepsy-associated risks.
美国神经病学学会 (AAN) 的几项癫痫实践指南建议神经科医生与患者及其家长进行对话。我们旨在确定患有癫痫的儿科患者的家长是否了解癫痫质量指标 (EQM)，以及他们是否记得与孩子的神经科医生讨论过每个 EQM。调查在与华盛顿特区和弗吉尼亚州夏洛茨维尔的癫痫中心相关的五个诊所地点分发给家长。家长调查问卷的关键问题包括神经科医生是否讨论过，或者家长是否了解包括药物副作用、安全性、生殖健康、向成人护理过渡、学习和注意力问题、骨骼健康、癫痫猝死 (SUDEP) 和癫痫相关死亡风险在内的 EQM 主题。关于 EQM 讨论的信息没有从神经科医生或医疗记录中收集。在 233 份完成的调查中，家长的知识和神经科医生对 EQM 的讨论高度相关 (p < .00001)。与高家长知识相关的讨论最多的 EQM 是药物副作用、安全性、学习和注意力问题以及骨骼健康。癫痫猝死讨论和了解最少。我们发现，在从城市到农村社区的各种环境中，都存在一致的遵循 EQM 的护理实践，涵盖了所有年龄段和癫痫严重程度的患者，并由具有不同癫痫专业知识水平的神经科医生提供服务。尽管在几个措施上报告了高遵医率，但我们发现仍有改进的空间。查询和咨询 EQM 应该是一个持续的对话，随着孩子的年龄和与癫痫相关的风险而不断发展。
