Optimizing Care for Patients with Drug-Resistant Epilepsy

优化耐药性癫痫患者的护理

• 批准号: 10589296
• 负责人: Chloe E Hill
• 金额: $ 22.03万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-12-15 至 2027-11-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10589296
• 关键词: American; Anticonvulsants; Caring; Clinic; Clinic Visits; Clinical; Clinical Trials; Clinical Trials Design; Communication; Communication Tools; Data Analyses; Data Collection; Development; Effectiveness; Effectiveness of Interventions; Epilepsy; Foundations; Freedom; Future; Goals; Health Policy; Health Priorities; Health Services Research; Individual; Intractable Epilepsy; Measures; Mental Health; Mentorship; Methods; Michigan; Neurology; Operative Surgical Procedures; Outcome; Patient Care; Patient-Centered Care; Patient-Focused Outcomes; Patients; Process Measure; Provider; Qualitative Methods; Quality of life; Randomized, Controlled Trials; Research; Research Personnel; Seizures; Tablets; Testing; Training; Universities; Work; acceptability and feasibility; cognitive function; comparison control; design; improved; improved outcome; individual patient; innovation; instrument; mHealth; multidisciplinary; nervous system disorder; patient oriented; patient-clinician communication; preference; primary outcome; programs; prospective; secondary outcome; tool; usability; user centered design

PROJECT SUMMARY/ABSTRACT Seizure freedom is an elusive goal for the vast majority of the 1,000,000 Americans with drug-resistant epilepsy. While the primary goal of epilepsy treatment is seizure control, this is not achievable for most patients with drug-resistant epilepsy. Yet pursuit of seizure freedom dominates epilepsy care, often with patients unaware of the small likelihood of seizure freedom. Moreover, providers may assume that every patient’s top goal is seizure freedom rather than other important determinants of quality of life, such as mental health or cognitive function. This lack of clear patient-provider communication around individual patient priorities leads to missed opportunities to improve patient-centered outcomes for patients with drug-resistant epilepsy. Priority communication tools, which elicit patient priorities and support patient-provider goal setting around those priorities, have improved patient-centered outcomes in other clinical contexts; but no such tools exist for patients with drug-resistant epilepsy. The objective of this application is to develop a mobile health priority communication tool for patients with drug-resistant epilepsy. The central hypothesis is that the priority communication tool can enhance patient-provider communication to align care priorities and ultimately improve clinical outcomes for patients with drug-resistant epilepsy. Dr. Hill’s research and training goals will be accomplished through the following specific aims: (1) To adapt a priority communication tool to enhance patient-provider communication during clinic visits for patients with drug-resistant epilepsy, and (2) To conduct a clinical trial to assess whether patients who receive the tablet-based waiting room priority communication tool have improved outcomes compared to patients who do not receive the tool. Findings from this study will define parameters for a full-scale prospective randomized controlled trial (R01) testing the intervention’s effectiveness to improve quality of life and clinical outcomes for patients with drug-resistant epilepsy. Dr. Hill has a strong foundation in clinical epilepsy and health services research. She will develop further expertise in qualitative data collection and analysis, stated preference methods, user-centered design of mobile health tools, and clinical trial design. Her long-term goal is to become an independent clinician-investigator in the development and testing of mobile health communication tools to facilitate patient-centered care and thereby improve outcomes for neurology patients. This proposal capitalizes on the unique strengths of the University of Michigan, the Neurology Health Services Research Program and the Institute for Healthcare Policy and Innovation, and an exceptional multidisciplinary mentorship team.

项目概要/摘要 对于 100 万耐药美国人中的绝大多数人来说，摆脱癫痫发作是一个难以实现的目标 虽然癫痫治疗的主要目标是控制癫痫发作，但这对大多数患者来说是无法实现的。 然而，对于耐药性癫痫患者来说，追求无癫痫发作是癫痫治疗的主导因素。 此外，医疗服务提供者可能会认为每个患者都没有癫痫发作的可能性很小。 目标是摆脱癫痫发作，而不是生活质量的其他重要决定因素，例如心理健康或 缺乏围绕个体患者优先事项的清晰的患者与提供者的沟通会导致认知功能。 错过了改善耐药性癫痫患者以患者为中心的结果的机会。 沟通工具，引发患者的优先事项并支持患者-提供者围绕这些目标设定目标 优先事项，在其他临床环境中改善了以患者为中心的结果；但不存在这样的工具； 该应用程序的目标是开发移动健康优先事项。 耐药性癫痫患者的沟通工具 中心假设是优先。 沟通工具可以增强患者与提供者之间的沟通，以协调护理优先事项并最终改善 耐药性癫痫患者的临床结果将是希尔博士的研究和培训目标。 通过以下具体目标来实现： (1) 采用优先沟通工具，以加强 在耐药性癫痫患者就诊期间进行患者与提供者的沟通，以及 (2) 进行 一项临床试验，旨在评估接受基于平板电脑的候诊室优先通讯工具的患者是否 与未接受该工具的患者相比，治疗结果有所改善。本研究的结果将确定。 用于测试干预有效性的全面前瞻性随机对照试验（R01）的参数 Hill 博士在改善耐药性癫痫患者的生活质量和临床结果方面具有很强的优势。 她将在临床癫痫和健康服务研究方面奠定进一步的专业知识。 数据收集和分析、规定的偏好方法、以用户为中心的移动健康工具设计，以及 她的长期目标是成为一名独立的临床研究人员。 和测试移动健康通信工具，以促进以患者为中心的护理，从而改善 该提案利用了伦敦大学的独特优势。 密歇根州，神经病学健康服务研究计划和医疗保健政策研究所 创新和卓越的多学科指导团队。