Patient Health Experiences: Using Patient Narratives to Improve Tinnitus Rehabilitation Services and Outcomes

患者健康体验：利用患者叙述改善耳鸣康复服务和结果

• 批准号: 10640149
• 负责人: KHAYA Delaine CLARK
• 金额: --
• 依托单位: PORTLAND VA MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-01 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10640149
• 关键词: Anxiety; Award; Awareness; Caring; Chronic; Chronic Disease; Clinical; Cognitive Therapy; Coping Skills; Data; Databases; Decision Making; Development; Devices; Drops; Ear; Evaluation; Evidence based treatment; Feedback; Feeling suicidal; Frustration; Future; Goals; Health; Health Personnel; Health system; Hearing; Individual; Internet; Intervention; Interview; Marketing; Mental Depression; Mental Health; Methodology; Methods; Oncology; Outcome; Patient Education; Patient-Centered Care; Patients; Persons; Pilot Projects; Post-Traumatic Stress Disorders; Prevalence; Process; Provider; Quality of life; Rehabilitation Outcome; Rehabilitation therapy; Reporting; Research; Research Proposals; Rheumatoid Arthritis; Sampling; Self Management; Services; Sleep Disorders; Sleep disturbances; Source; Surveys; Tinnitus; Training; Traumatic Brain Injury; United States Department of Veterans Affairs; Veterans; Voice; Vulnerable Populations; behavioral health; clinical practice; comorbidity; cost; design; disability; emotional reaction; evidence base; experience; functional improvement; functional status; hearing impairment; help-seeking behavior; improved; individual patient; information gathering; military veteran; patient engagement; patient-clinician communication; peer; physical conditioning; programs; prototype; recruit; rehabilitation research; rehabilitation service; rehabilitation strategy; uptake; video module; willingness

Tinnitus, a chronic condition for which there is no “cure,” is the most common service-connected disability at the Department of Veterans Affairs1. The functional effects of chronic tinnitus can vary widely, ranging from being a mild nuisance to being completely disabling.2 Veterans who are negatively impacted by tinnitus commonly report sleep disturbance, difficulty concentrating, and disruptive emotional reactions2. In addition, Veterans with tinnitus also suffer from multiple comorbidities, including depression, anxiety, sleep disorders, post-traumatic stress disorder (PTSD), traumatic brain injury (TBI), and suicidal ideation3-5. Although some Veterans with tinnitus spontaneously develop their own unique coping strategies to reduce the impact of tinnitus on their lives, others need a lot of support to improve quality of life and functional status, especially in the context of other physical or mental health comorbidities. In our program of research on tinnitus among Veterans6,7, we have found that there are inconsistent standards of tinnitus care in VA settings8. Cognitive Behavioral Therapy (CBT) has been shown to improve quality of life and functional status with tinnitus9, however, many VA health care providers report being unaware that the method can be used to assist people negatively impacted by tinnitus7. In contrast to the relative difficulty finding providers who are knowledgeable about effective, evidence-based care for tinnitus, patients find easy access to products (supplements, ear drops, untested devices, etc.) that falsely promise a cure and are directly marketed, often via the internet, to people struggling with tinnitus. Trying multiple over- the-counter products in hopes of finding a cure that does not exist often exacerbates anxiety and frustration in Veterans with tinnitus, a vulnerable population already burdened with managing multiple co-morbid behavioral health conditions. Past interviews with individuals with hearing loss and tinnitus has shown that peer testimonials are important factors in Veterans' sense of hope about their future and in their willingness seeking help for these conditions10. Thus, Veterans' stories about their challenges, decision-making processes, experiences with seeking a cure, and experiences with trying various coping strategies in spite of the lack of a cure could be leveraged as an invaluable source of wisdom, information, and support for their peers with bothersome tinnitus who are struggling and seeking answers that are hard to find. The gold standard of rendering patient narratives on health conditions is called the “The Database of Individual Patients' Experience” (DIPEx). DIPEx is rigorous, evidence-based methodology for eliciting rich information on the health experiences of a broad range of patients with diverse chronic health conditions. The specific aims of this mixed-method are to: (1) Use DIPEx methodology to document Veterans' experiences (n= 10-15) with bothersome tinnitus and rehabilitative services in relation to disability, function, and overall quality of life; (2) Develop a prototype video module of Veterans' narratives on tinnitus; and (3) Evaluate of the prototype to assess resonance and perceived value of Veteran narratives (e.g., impact on decision-making, self-management, functioning, and quality of life) in Veterans with bothersome tinnitus (n=25). In Year 1, we will develop the DIPEx interview guide and identify and recruit a diverse sample 40 Veterans for interviews or to evaluate the prototype. The qualitative data obtained in Aim 1 will be used to develop a prototype of a DIPEx module of Veterans' narratives. It will contribute to Aim 3, which is a survey instrument, using think aloud methodology, to evaluate the DIPEx prototype. Protype development and evaluation will be the focus of Year 2. This research will provide preliminary evidence on the impact of a narrative approach on functioning and quality of life in Veterans with bothersome tinnitus, and the information gathered will be used inform the development of a full DIPEx module (30-50 narratives) as part of a future Merit Review Award.

耳鸣是一种慢性病，没有“治愈”的方法，是最常见的与服务有关的疾病。 退伍军人事务部的残疾人1。耳鸣的症状有哪些呢？ 从轻微的滋扰到完全残疾。2受到负面影响的退伍军人 耳鸣通常报告睡眠障碍，难以集中注意力，和破坏性的情绪反应2。在 此外，退伍军人耳鸣还患有多种合并症，包括抑郁，焦虑，睡眠 创伤后应激障碍（PTSD）、创伤性脑损伤（TBI）和自杀意念3 -5。虽然 一些退伍军人与耳鸣自发发展自己独特的应对策略，以减少的影响， 耳鸣对他们的生活，其他人需要很多的支持，以提高生活质量和功能状态，特别是在 其他身体或精神健康共病的背景。 在我们对退伍军人耳鸣的研究计划中6，7，我们发现， 耳鸣的危害有哪些？认知行为疗法（CBT）已被证明可以改善 生活质量和功能状态与耳鸣9，然而，许多VA医疗保健提供者报告说， 没有意识到该方法可以用来帮助受到耳鸣负面影响的人7。相对于 相对困难找到谁是有效的知识提供者，以证据为基础的护理耳鸣， 患者很容易获得产品（补充剂、滴耳剂、未经测试的设备等）虚假承诺， 治疗和直接销售，往往通过互联网，与耳鸣的人斗争。尝试多个- 希望找到一种不存在的治疗方法的柜台产品往往会加剧焦虑和沮丧， 退伍军人与耳鸣，一个脆弱的人口已经背负着管理多种共病行为 健康状况。过去对听力损失和耳鸣患者的采访表明， 见证是退伍军人对未来的希望感和他们寻求 帮助这些条件10.因此，退伍军人的故事，他们的挑战，决策过程， 寻求治疗的经验，以及尝试各种应对策略的经验，尽管缺乏一个 治愈可以作为一个宝贵的智慧来源，信息，并支持他们的同行， 耳鸣是一种很难找到的症状，也是一种很难治愈的症状。 呈现患者健康状况叙述的黄金标准被称为“健康状况数据库”。 个体患者经验”（DIPEX）。DIPEX是一种严谨的、基于证据的方法， 关于患有各种慢性健康状况的广泛患者的健康经历的信息。的 这种混合方法的具体目标是：（1）使用DIPEX方法来记录退伍军人的经验（n= 10-15）与困扰耳鸣和康复服务有关的残疾，功能，和整体素质 （2）开发退伍军人耳鸣叙述的原型视频模块;（3）评估 原型来评估退伍军人叙述的共鸣和感知价值（例如，对决策的影响， 自我管理，功能和生活质量）在退伍军人与恼人的耳鸣（n=25）。 在第一年，我们将制定DIPEX面试指南，并确定和招募多样化的样本40 对老兵进行面试或对样机进行评估。目标1中获得的定性数据将用于 开发一个退伍军人叙述DIPEX模块的原型。它将有助于实现目标3，即一项调查， 仪器，使用大声思考的方法，以评估DIPEX原型。原型开发和 评估将是第二年的重点。 这项研究将为叙事方法对功能的影响提供初步证据 和生活质量的退伍军人与令人烦恼的耳鸣，收集的信息将用于通知 开发一个完整的DIPEX模块（30-50个叙述），作为未来优秀评审奖的一部分。