Listening to Gulf War Vets: A Qualitative Inquiry into the Health Experience and Treatment of those with Chronic Multisymptom Illness

聆听海湾战争退伍军人的心声：对慢性多症状疾病患者的健康经历和治疗进行定性调查

• 批准号: 10290889
• 负责人: Shannon Madore Nugent
• 金额: --
• 依托单位: PORTLAND VA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-01 至 2023-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10290889
• 关键词: Administrator; Assessment tool; Caregivers; Caring; Chronic; Clinical; Clinical Services; Communication; Data; Data Collection; Databases; Development; Dissemination and Implementation; Ensure; Epidemiology; Ethnic Origin; Focus Groups; Gender Identity; Geographic Locations; Goals; Gulf War; Gulf War veteran; Health; Health Services Research; Health system; Healthcare; Healthcare Systems; Hearing; Individual; Interview; Language; Libraries; Link; Literature; Measures; Methodology; Methods; Modeling; Needs Assessment; Outcome Assessment; Outcome Measure; Participant; Patient Outcomes Assessments; Patient Preferences; Patients; Pattern; Policies; Process; Qualitative Methods; Questionnaires; Race; Recommendation; Registries; Research; Research Personnel; Resources; Sampling; Services; Sex Orientation; Socioeconomic Status; Structure; Survey Methodology; Surveys; Symptoms; System; Testing; Therapeutic; Time; Treatment Protocols; Universities; Update; Variant; Veterans; Voice; Work; associated symptom; base; care delivery; care providers; clinical care; clinical practice; design; dissemination strategy; epidemiology study; experience; improved; individual patient; individualized medicine; insight; instrument; military veteran; patient oriented; policy recommendation; randomized trial; repository; satisfaction; social; symptom cluster; treatment center

Anticipated Impacts on Veterans Healthcare: The first comprehensive qualitative study of the health experiences of Gulf War era Veterans will yield significant insight into the features of effective care models and treatments, as well as satisfaction with care. It will also create a rich, ongoing resource that can inform VA's effort to improve customer service and care for Gulf War Veterans including a specific focus on those with multisymptom illness and their caregivers. This research will identify better illness-specific health measures and promising therapeutic approaches appropriate to VA settings. Finally, our goal is to activate Veterans to be more engaged with the health system and VA research and policy processes, as well as to improve Gulf War Veteran communication with VA care providers. Project Background: While the proportion of Gulf War era Veterans seen in the VA is increasing rapidly, a disproportionate number of these Veterans suffer from chronic multisymptom illnesses. Although great efforts have been made to study the causes, we know little about the health experiences of Gulf War era Veterans with or without multisymptom illnesses. Gulf War registry studies have used rigorous quantitative methods that are well suited to broad and large-scale epidemiologic inquiry but are not well suited to characterize the atypical symptoms, effects of co-occurring symptoms, particular challenges related to symptoms and symptom combinations, and variations in symptom presentation among Gulf War Veterans with multisymptom illness. Project Objectives: The overarching goal is to create a comprehensive repository of qualitative patient interviews about experiences of Gulf War-related, chronic, multisymptom illness that can be used to motivate system change; inform research, clinical practice, and VA policy; and provide an ongoing resource for Veterans, caregivers, researchers, clinicians, and VA system leaders. The specific aims are: (1) Using qualitative methods, amplify patient and caregiver voices in Gulf War-related research and clinical care to improve understanding of experiences of illness and illuminate patient preferences which will contribute to the design and conduct of patient-centered research and care models; (2) Using mixed methods, improve understanding of the character of symptoms and functional problems specific to Gulf War era Veterans with multisymptom illness, and provide this information as a resource to develop improved patient-reported outcome measures; and (3) Using the results of these studies, develop products that identify promising treatments, regimens, and care models that can be studied in randomized trials or implemented broadly throughout the VA health system. Project Methods: To achieve these objectives, we will use a proven methodology to structure the conduct of video- and audio-taped interviews. The key features of this approach are (1) maximum variation sampling to capture the widest possible range of views and experience and to ensure representation from marginalized, seldom heard, historically underrepresented, and socially excluded groups; (2) in depth, individual interviews with Veterans and caregivers rather than focus groups or questionnaires; (3) dissemination strategies that are designed to accelerate system change and responsiveness to Veterans' problems; and (4) development of a repository in which health experience research can be reapplied and updated rather than used for a particular study and then lost. We will also employ mixed methods to ensure that broad and unbiased perspectives are incorporated in our research and products, including (1) conducting surveys of Veteran participants to use in triangulation and expansion mixed methods approaches, (2) linking findings with existing epidemiological research, and (3) conducting a literature assessment according to IOM recommendations. These comprehensive methods avoid bias in interpreting interview data and ensure consideration of factors associated with key differences in patient experience (e.g., race/ethnicity, socio-economic status, gender identity, sexual orientation, geographic region, previous treatment regimen, etc.).

对退伍军人医疗保健的预期影响：第一次全面的健康定性研究 海湾战争时期退伍军人的经验将对有效护理模式的特点产生重要的见解， 治疗，以及对护理的满意度。它还将创建一个丰富的，持续的资源，可以告知VA的 努力改善客户服务和海湾战争退伍军人的照顾，包括对那些有特定重点的 多症状疾病及其护理人员。这项研究将确定更好的疾病具体的健康措施 和有前途的治疗方法适合VA设置。最后，我们的目标是激活退伍军人， 更多地参与卫生系统和退伍军人事务部的研究和政策进程，以及改善海湾战争 与VA护理提供者的交流。 项目背景：虽然海湾战争时期退伍军人的比例在VA中迅速增加， 这些退伍军人中有不成比例的人患有慢性多症状疾病。虽然付出了巨大的努力 虽然人们一直在研究其原因，但我们对海湾战争时期退伍军人的健康状况知之甚少。 有或没有多症状的疾病。海湾战争登记研究使用了严格的定量方法， 非常适合广泛和大规模的流行病学调查，但不适合描述 非典型症状、并发症状的影响、与症状和症状相关的特殊挑战 组合，和海湾战争退伍军人与多症状疾病的症状表现的变化。 项目目标：总体目标是创建一个全面的定性患者信息库， 关于海湾战争相关的，慢性的，多症状的疾病的经历的采访，可以用来激励 系统变更;通知研究、临床实践和VA政策;并提供持续资源， 退伍军人，护理人员，研究人员，临床医生和VA系统领导者。具体目标是：（1）利用 定性方法，在海湾战争相关研究和临床护理中放大患者和护理人员的声音， 提高对疾病经历的理解，并阐明患者的偏好，这将有助于 设计和实施以患者为中心的研究和护理模式;（2）使用混合方法， 了解海湾战争时期退伍军人特有的症状和功能问题的特征， 多症状疾病，并提供此信息作为资源，以制定改进的患者报告 结果的措施;（3）使用这些研究的结果，开发产品，确定有前途的 可以在随机试验中研究或广泛实施的治疗、方案和护理模式 整个卫生系统。 项目方法：为了实现这些目标，我们将使用一种行之有效的方法来组织以下活动： 录像和录音采访。这种方法的主要特点是（1）最大变异抽样， 收集尽可能广泛的意见和经验，并确保边缘化群体的代表性， 很少听到，历史上代表性不足，社会排斥的群体;（2）深入，个别访谈 与退伍军人和照顾者，而不是焦点小组或问卷调查;（3）传播战略， 旨在加速系统变革和对退伍军人问题的反应;以及（4）开发一个 健康体验研究可以重新应用和更新的存储库，而不是用于特定的 学习，然后失去。我们还将采用混合方法，以确保广泛和公正的观点， 纳入我们的研究和产品，包括（1）对退伍军人参与者进行调查， 三角测量和扩展混合方法，（2）将研究结果与现有的流行病学方法联系起来， 研究，（3）根据IOM建议进行文献评估。这些 全面的方法避免了在解释访谈数据时的偏见，并确保考虑到各种因素 与患者体验的关键差异相关（例如，种族/民族、社会经济地位、性别 身份、性取向、地理区域、先前的治疗方案等）。