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

耳鸣是一种慢性疾病，无法治愈，是最常见的与服务相关的疾病 退伍军人事务部的残疾1.慢性耳鸣的功能影响可能有很大不同， 从轻微的麻烦到完全残疾。2退伍军人受到 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……里面 此外，患有耳鸣的退伍军人还患有多种并发症，包括抑郁、焦虑、睡眠 精神障碍、创伤后应激障碍(PTSD)、创伤性脑损伤(TBI)和自杀念头3-5。虽然 一些患有耳鸣的退伍军人自发地制定了自己独特的应对策略，以减少耳鸣的影响 耳鸣对他们的生活，其他人需要很多支持来改善生活质量和功能状态，特别是在 其他身体或精神健康合并症的背景。 在我们对退伍军人6，7耳鸣的研究中，我们发现有不一致的 退伍军人病区耳鸣护理标准8。认知行为疗法(CBT)已被证明可以改善 然而，许多退伍军人保健提供者报告说，耳鸣患者的生活质量和功能状况 没有意识到这种方法可以用来帮助受耳鸣影响的人。与之相对的是 相对很难找到对耳鸣进行有效、循证护理的提供者， 患者发现很容易获得产品(补充剂、滴耳液、未经测试的设备等)错误地承诺了一个 这些药物通常通过互联网直接销售给与耳鸣作斗争的人。尝试多个Over- 希望找到并不存在的治愈方法的柜台产品往往会加剧患者的焦虑和沮丧 患有耳鸣的退伍军人，这一弱势群体已经背负着管理多种共病行为的负担 健康状况。过去对听力损失和耳鸣患者的采访表明，同龄人 表彰是退伍军人对未来的希望和他们自愿寻求的重要因素 帮助治疗这些病症。因此，退伍军人的故事关于他们的挑战，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 CURE可以被用作为他们的同行提供智慧、信息和支持的宝贵来源 令人讨厌的耳鸣，他们正在苦苦挣扎，寻找难以找到的答案。 呈现病人关于健康状况的叙述的黄金标准被称为“数据库 个别病人的经验“(DIPEx)。DIPEx是以证据为基础的严谨方法，用于吸引RICH 关于各种慢性病患者的健康经历的信息。这个 这种混合方法的具体目标是：(1)使用DIPEx方法记录退伍军人的经历(n= 10-15)与残疾、功能和整体素质有关的烦人的耳鸣和康复服务 (2)开发关于耳鸣的退伍军人叙事的原型视频模块；以及(3)评估 评估老兵叙述的共鸣和感知价值的原型(例如，对决策的影响， 自我管理、功能和生活质量)患有烦人耳鸣的退伍军人(n=25)。 在第一年，我们将制定DIPEx面试指南，并确定和招募不同的样本40 老兵接受采访或对原型进行评估。在目标1中获得的定性数据将用于 开发一个退伍军人故事的DIPEx模块的原型。它将对目标3做出贡献，这是一项调查 仪器，使用有声思考方法，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 以及患有烦人耳鸣的退伍军人的生活质量，收集的信息将用于向 开发完整的DIPEx模块(30-50个叙述)，作为未来功绩审查奖的一部分。

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.