Ronen Gabriel M, Rosenbaum Peter L, Boyle Michael H, Streiner David L
Department of Pediatrics, McMaster University and McMaster Children's Hospital, Hamilton, ON, Canada.
Department of Pediatrics, McMaster University and McMaster Children's Hospital, Hamilton, ON, Canada.
Epilepsy Behav. 2018 Sep;86:19-24. doi: 10.1016/j.yebeh.2018.05.009. Epub 2018 Jul 21.
In the 21st century, clinicians are expected to listen to, and understand their patients' views about, their conditions and the effects that these conditions have on their functioning, values, life goals, and welfare. The goals of this review are as follows: (i) to inform, update, and guide clinicians caring for children with epilepsy about developments in the content and new methods of research on patient-reported outcomes, quality of life, and functioning; and (ii) to discuss the value of using these concepts to explore the impact of diverse interventions that are implemented in daily practice. Drawing on the literature and our program of research over the past two decades, we focus on our current understanding of a variety of health concepts and recently acquired knowledge about their significance for the lives of patients and their families. We discuss the advantages of measuring patient-reported outcomes that tell us what is important to patients. We advise on what characteristics to look for when choosing a patient-reported measure, and the relevance of these considerations. In addition, we address gaps in research knowledge and the causes of confusion that have limited their use in our daily clinical practice.
在21世纪，临床医生需要倾听并理解患者对自身病情以及这些病情对其功能、价值观、生活目标和福祉所产生影响的看法。本综述的目标如下：（i）为照料癫痫患儿的临床医生提供信息、进行更新并给予指导，内容涉及患者报告结局、生活质量和功能方面研究的进展及新方法；（ii）讨论运用这些概念来探究日常实践中所实施的各种干预措施影响的价值。基于过去二十年的文献及我们的研究项目，我们聚焦于目前对各种健康概念的理解以及最近获得的关于它们对患者及其家庭生活重要性的知识。我们讨论测量患者报告结局的优势，这些结局能告诉我们对患者而言什么是重要的。我们就选择患者报告测量方法时应关注的特征以及这些考量的相关性提供建议。此外，我们还探讨了研究知识方面的空白以及导致其在日常临床实践中应用受限的困惑原因。
