Improving Participation in Pulmonary Rehabilitation through Peer-Support and Storytelling

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ABSTRACT Exacerbations of Chronic Obstructive Pulmonary Disease (COPD) lead to roughly 1.5 million ED visits and 700,000 hospitalizations annually. Recovery is slow, and accompanied by high levels of acute care utilization and mortality. Pulmonary Rehabilitation (PR) is a structured program of exercise and self-management support that has been shown to relieve dyspnea and improve quality of life. Clinical guidelines recommend PR for patients with stable COPD and after an exacerbation. Unfortunately, even when referred by physicians, our research has shown that few patients who might benefit from PR ever begin treatment. The primary goal of this project is to identify effective strategies for promoting and sustaining participation in PR. Peer Support involves pairing a patient with a trained peer from a similar background, and facing similar health challenges, who has completed PR. There is a growing body of evidence demonstrating the feasibility, acceptability, and effectiveness of telephonic peer support for chronic disease management. Narrative interventions, or `Storytelling', are novel approaches for changing attitudes and behaviors of patients that involve creating and disseminating videos narrated by individuals with lived experience with the same condition or facing the same treatment. Storytelling interventions have been shown to help patients achieve better blood pressure control, and storytelling is being studied in a variety of other clinical contexts. In the R61 Phase, we will recruit and train a cohort of peer coaches in behavior change techniques, and will recruit a diverse group of storytellers, capture their narratives on video, and create a library of 6-8 powerful stories. We will finalize our protocol, trial infrastructure, and pilot our recruitment strategy. During the R33 Phase, we will recruit 305 adults treated for exacerbation of COPD, and randomize them to 1) Enhanced “Usual Care” (eUC); 2) eUC + Storytelling; or 3) eUC + Peer Support. We will evaluate the effectiveness of each strategy compared to eUC, and to each other, at promoting participation in PR at 6 months. Using a mixed-methods approach, we will evaluate intervention acceptability, sustainability, and cost, from the perspectives of the patients and peer coaches as well as PR program staff and hospital leadership. We will use these findings to refine the strategies and to disseminate an implementation package that will enable other PR programs to adopt these approaches. This project engages key stakeholders in study conceptualization, execution, and dissemination, and is responsive to the NHLBI/CDC COPD National Action Plan that calls for the development of strategies to increase the number of Americans that benefit from PR.