Background: Individuals who have sickle cell disease (SCD) must manage acute and chronic pain. However, there has been limited patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER) into what the most effective approaches are to support people with SCD in managing their pain outside of clinical settings. A research agenda addressing self-management of SCD pain, informed by individuals who have lived experience, is needed. This work is especially important because SCD primarily affects people of color, and there is strong evidence of racial/ethnic inequities in pain care.
The timing is right for this project as efforts to find pain relief have been complicated and exacerbated by the COVID-19 pandemic, as have the challenges of navigating a medical system that often mistreats people of color.
Proposed Solution to the Problem: The project team will organize two virtual group discussions of the same participants to review extant research in self-management of pain in SCD and other conditions, develop an understanding of PCOR/CER approaches, and discuss future PCOR/CER ideas that would improve how individuals with SCD can better self-manage their pain. Participants will include individuals who have SCD and their families, providers who care for individuals who have SCD, researchers who have done work in SCD, and policy advocates.
Objectives: The project seeks to generate ideas for future PCOR/CER that will help individuals who have SCD better treat and self-manage their pain.
Activities: Prior to the first group discussion, organizers will review and summarize the current state of knowledge for self-managing pain specific to SCD. They will also identify and invite patients and other stakeholders to join the discussions.
The first discussion will focus on community building, reviewing the current state of knowledge for self-managing pain, and educating stakeholders about PCOR/CER. The second discussion will focus on identifying areas of research that are needed.
Organizers will review audio-recordings and notes of both group discussions to produce a summary report and accompanying audience-appropriate materials that will highlight future research needs related to improving self-management of pain in individuals with SCD. These materials will be disseminated across the research and patient/policy advocate communities.
Projected Outcomes and Outputs: The project will produce a literature review of SCD pain self-management research and a report with audience-appropriate accompanying materials outlining PCOR/CER future research needs and priorities related to improving pain self-management among individuals with SCD. The team hopes that the dissemination of this work will inform and drive new research in SCD and pain self-management among the research and patient/policy advocacy communities.
Patient and Stakeholder Engagement Plan: Individuals who have SCD and their families, providers, researchers, and policy advocates will participate in the group discussions. Three individuals who have SCD will co-produce, with the organizers, background materials for the discussion groups. The discussions will be co-facilitated by a professional facilitator and an individual who has SCD. Research recommendations will be validated by eliciting stakeholder input to confirm PCOR/CER directions are feasible and meaningful.
Project Collaborators: Massachusetts Health Quality Partners (MHQP) and the Greater Boston Sickle Cell Disease Association (GBSCDA) will lead the project.