SToRytelling to Improve DiseasE outcomes in Gout: The STRIDE-GO Study

描述(由申请人提供)： 背景和目的：慢性病患者的疾病自我管理能力差是一个问题，与较差的健康结局和较高的卫生保健资源利用率有关。与高加索人相比，非裔美国人的疾病自我管理能力更差，在大多数慢性病中的结局也更差。由于痛风、慢性阻塞性肺疾病(COPD)、充血性心力衰竭(CHF)等慢性疾病的严重症状通常是间歇性的，患者通常不会意识到疾病的严重性和对疾病并发症的易感性。我们的目标是在行为改变的健康信念模式(HBM)的基础上，利用叙事传播理论作为干预交付的方法论框架，开发以患者为中心的、与文化相关的叙事干预，或“讲故事”。我们的目标是改善非裔美国退伍军人的疾病自我管理，将痛风作为我们的“测试案例”。用患者自己的声音讲故事能够直接和更有效地帮助患者克服内部和结构性障碍，并加强与最佳痛风自我管理相关的好处。虽然在高血压这一无症状的慢性疾病上被证明是成功的，但没有证据表明讲故事干预对慢性阻塞性肺病、充血性心力衰竭、痛风等慢性症状性疾病有效。项目目标和目的：我们的长期目标是改善退伍军人的健康状况，减少健康差距。这项拟议研究的目标是朝着这个方向迈出的第一步，即开发一种新的以退伍军人自己的声音讲述故事的干预措施，以改善患有痛风的非裔美国退伍军人的疾病自我管理和预后。痛风是退伍军人中最常见的炎症性关节炎，与显著的疼痛和痛苦有关，利用和 成本。我们的具体目标(SA)S是：SA1，形式化地确定视频干预的组成部分-与患者访谈进行形成性评估，以制定以理论为基础、与文化相关的讲故事干预措施，以促进患有痛风的非裔美国退伍军人的疾病自我管理；SA2，创建干预视频-根据特定目标1的结果制定并测试讲故事干预的可行性；SA3，制定视频讲故事手册-制定一份供调查人员使用的手册，描述讲故事的概念，并提供创建视频讲故事干预的分步程序。项目方法：对于目标1，我们将使用HBM探测器对弗吉尼亚州伯明翰和费城的36名患有痛风的非裔美国退伍军人进行深入访谈，以确定最佳痛风自我管理的障碍和促进者。对于目标2，我们将从目标1的定性工作中邀请12-15位讲故事的明星，他们是根据他们的口才和故事的说服力而被选中的，我们将创建一个干预视频，将故事录制下来，分解成故事单元，根据HBM和叙事传播理论的结构对故事进行评级，使用为患者开发的材料添加教学材料作为“了解更多”部分，在伯明翰和费城弗吉尼亚州的32名患有痛风的非裔美国退伍军人中测试可行性，反复完善和最终确定讲故事干预，同时进行对照干预。我们将开发一本讲故事手册，供其他调查人员使用，并举办高铁与发展网络研讨会，以传播知识。与退伍军人管理局的使命和优先事项保持一致：这项研究服务于退伍军人管理局改善退伍军人健康的使命，并通过关注疾病结局较差的研究不足的少数群体，解决健康差距的一个优先领域。这项研究的结果将导致低成本的以患者为中心的干预 对于患有痛风的非裔美国退伍军人改善患者预后，我们建议在未来的随机试验中进行测试。痛风将成为慢性病自我管理的“用例”。如果成功，讲故事干预可以适用于其他慢性症状性疾病，如慢性阻塞性肺病、充血性心力衰竭等。

DESCRIPTION (provided by applicant): Background and Objective: Poor disease self-management in chronic diseases is a problem and is associated with poorer health outcomes and higher health care resource utilization. Compared to Caucasians, African-Americans have even poorer disease self-management and worse outcomes in most chronic diseases. Patients often do not perceive disease severity and susceptibility to disease complications since severe symptoms of chronic conditions such as such as gout, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) etc. are usually intermittent. Our objective is to develop a patient-centered, culturally relevant narrative intervention, or "storytelling", based on the Health Belief Model (HBM) for behavior change, using narrative communication theory as methodological framework for intervention delivery. We aim to improve disease self-management among African-American Veterans, using gout as our "test case". Storytelling in the patient's own voices has the power to directly and more effectively help patients overcome intrapersonal and structural barriers and reinforce the benefits associated with optimal gout self-management. While shown to be successful in hypertension, an asymptomatic chronic disease, no evidence of efficacy of storytelling intervention exists for chronic symptomatic diseases, such as COPD, CHF, gout etc. Project Objectives and Aims: Our long-term objective is to improve health outcomes in Veterans and reduce health disparities. The objective of the proposed study, the first step in this direction, i to develop a novel storytelling intervention in Veterans' own voices to improve disease self-management and outcomes in African- American Veterans with gout, the most common type of inflammatory arthritis in Veterans, associated with significant pain and suffering, utilization and cost. Our Specific Aim (SA)s are: SA1, Formatively Identify Components of a Video Intervention - Conduct formative evaluations with patient interviews to develop a theory-based, culturally-relevant storytelling intervention to promote disease self-management among African-American Veterans with gout; SA2, Create an Intervention Video - Develop and test the feasibility of a storytelling intervention based on the results of Specific Aim 1; and SA3, Develop a Video Storytelling Manual - Develop a manual for use by investigators that describes the storytelling concept and presents step-by-step procedures for creating Video storytelling interventions. Project Methods: For Aim#1, we will perform in-depth interviews in 36 African-American veterans with gout at Birmingham and Philadelphia VA using HBM probes to identify barriers and facilitators to optimal gout self- management. For Aim#2, we will create an intervention video by inviting 12-15 storytelling stars from our qualitative work in Aim#1, chosen due to their eloquence and persuasive of their stories, videotaping the stories, decomposing into story units, rating stories on constructs of HBM and narrative communication theory, adding didactic material as "Learn more" section using material developed for patients, testing feasibility in focus groups in 32 African-American veterans with gout at Birmingham and Philadelphia VA, iteratively refining and finalizing the storytelling intervention alongside a control intervention.For Aim #3, we will develop a storytelling manual to be made available to other investigators and present HSR&D Cyber seminars for knowledge dissemination. Alignment with VA mission and priorities: This study serves the VA's mission of improving the health of veterans and by focusing on understudied minorities with poorer disease outcomes, addresses a priority area of health disparities. The results of this study will lead to a low cost patient-centered intervention for African- American Veterans with gout to improve patient outcomes, that we propose to test in a future randomized trial. Gout will serve as a "use case" for chronic disease self-management. If successful, the storytelling intervention can be adapted to other chronic symptomatic diseases such as COPD, CHF etc.