Background: Idiopathic pulmonary fibrosis (IPF) is a rare, progressive, irreversible lung disease of unknown cause that results in lung scarring and restrictive physiology. Involving people with IPF in research is challenging because it is rare among the general population, primarily affects older adults, and causes symptoms that make participation in research difficult, such as shortness of breath, coughing, limitations on physical activity, and reduced health-related quality of life. Treatments such as medicines, oxygen, pulmonary rehabilitation, and lung transplant can help with symptoms and improve quality of life, but there is no cure. The course and severity of symptoms are highly variable, but prognosis is typically poor, with median survival of three to five years after diagnosis. The inclusion of people with IPF in research, as with other critically ill populations with life-shortening diseases, warrants specialized attention.
Proposed Solution to the Problem: The proposed solution is to build on existing infrastructure that has been established for helping people with IPF and their families navigating IPF by incorporating education about outcomes research into the existing support group structure and disease education curriculums. The project setting is a large community network of IPF support groups across Pennsylvania, New Jersey, and Delaware. The project team will reach patients and families in this supportive environment where they already feel comfortable and empowered.
Objectives: The primary long-term objective is to work with patients and caregivers to develop tools to engage the clinical community so that they are well prepared to engage in future patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) efforts. The specific aims of this project are to: conduct an environmental scan of literature to identify patient and caregiver engagement models, enablers, and best practices in PCOR/CER among critically ill populations; develop a curriculum to educate patients and families about PCOR/CER and how it can benefit their community; and create a sustainable partnership with patients and families using support groups and educational events as a platform for delivering the curriculum to serve as a bridge from this groundwork to future engagement in PCOR/CER.
Activities: Initial activities include a scoping review to assess existing evidence for engagement among critically ill patients and families. The stakeholder board will evaluate these engagement strategies for their potential utilization in the IPF community. Next, in conjunction with the stakeholder board, the team will design a sustainable curriculum to educate and engage stakeholders. Finally, the team will design and deliver the curriculum using a peer-to-peer educational model.
Projected Outcomes and Outputs: Projected outputs include a report of engagement strategies for critically ill patients and families and adaptation strategies for IPF; a curriculum and training manual for peer educators to educate families about PCOR/CER; a fact sheet on community engagement, PCOR/CER; and a sustainability manual to maintain efforts and serve as a bridge to future engagement in PCOR/CER. Projected outcomes include increased community engagement, knowledge, and empowerment.
Patient and Stakeholder Engagement Plan: The team plans to continue to engage patients and other stakeholders meaningfully throughout the entire period of the proposed project. The team will have a stakeholder advisory board consisting of patients, care partners, clinicians, and/or advocacy leaders that will meet monthly to provide input on overall direction and specific activities for all project aims. In addition, the team will have a community engagement council made up of a group of people with expertise in community engagement who will advise the project leaders on stakeholder engagement.
Project Collaborators: The project is being co-led by researchers at Temple University College of Public Health and the Wescoe Foundation for Pulmonary Fibrosis.