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

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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.