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

对退伍军人医疗保健的预期影响：对退伍军人健康的首次全面定性研究 海湾战争时期退伍军人的经历将对有效的护理模式和 治疗以及对护理的满意度。它还将创建丰富、持续的资源，以便为退伍军人管理局 努力改善对海湾战争退伍军人的客户服务和关怀，包括特别关注那些 多症状疾病及其照顾者。这项研究将确定更好的针对疾病的健康措施 以及适合退伍军人管理局环境的有前景的治疗方法。最后，我们的目标是让退伍军人成为 更多地参与卫生系统和退伍军人管理局的研究和政策进程，以及改善海湾战争 与退伍军人管理局护理提供者的资深沟通。 项目背景：海湾战争时期退伍军人在退伍军人中的比例正在迅速增加， 这些退伍军人中有不成比例的人患有慢性多症状疾病。尽管付出了巨大的努力 尽管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经历知之甚少 有或没有多症状疾病。海湾战争登记研究使用了严格的量化方法， 非常适合于广泛和大规模的流行病学调查，但不适合表征 非典型症状、共生症状的影响、与症状和症状相关的特殊挑战 海湾战争退伍军人中患有多症状疾病的组合和症状表现的变化。 项目目标：首要目标是创建一个全面的定性患者信息库 采访海湾战争相关的慢性多症状疾病的经历，可以用来激励 系统更改；为研究、临床实践和退伍军人政策提供信息；并为 退伍军人、护理员、研究人员、临床医生和退伍军人制度领导者。具体目标是：(1)利用 定性方法，放大海湾战争相关研究和临床护理中患者和照顾者的声音 增进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，改进 对海湾战争时期退伍军人特有的症状和功能问题的特征的了解 多症状疾病，并提供这些信息作为资源，以开发改善患者报告 结果衡量标准；以及(3)利用这些研究的结果，开发确定有前景的产品 可在随机试验中研究或广泛实施的治疗方法、方案和护理模式 在退伍军人管理局的医疗系统中。 项目方法：为了实现这些目标，我们将使用经过验证的方法来组织 视频和录音采访。该方法的主要特点是：(1)最大方差抽样 获取尽可能广泛的观点和经验，并确保来自边缘化群体的代表性， 很少听到的、历史上代表性不足和被社会排斥的群体；(2)深入的个人采访 与退伍军人和照顾者合作，而不是与焦点小组或问卷调查；(3)传播战略 旨在加快系统变革和对退伍军人问题的反应；以及(4)开发一种 可以重新应用和更新健康体验研究的存储库，而不是用于特定的 学习，然后就输了。我们还将采用混合方法，以确保广泛和不偏不倚的观点 整合到我们的研究和产品中，包括(1)对资深参与者进行调查，以用于 三角测量和扩展混合方法方法，(2)将研究结果与现有流行病学联系起来 研究，以及(3)根据国际移民组织的建议进行文献评估。这些 综合方法避免在解读访谈数据时出现偏颇，并确保考虑因素 与患者经历的主要差异有关(例如，种族/民族、社会经济地位、性别 身份、性取向、地理区域、以前的治疗方案等)。

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.).