Project Summary

Background: Sickle cell disease (SCD) is a life-threating and inherited disease that predominantly affects people of color. The vaso-occlusive crisis, or pain crisis, is a hallmark of SCD, and usually manifests as an abrupt onset of severe and debilitating pain. Patients seeking care for pain crises are often described as drug seekers and of overplaying their pain, leading to poor treatment. These barriers and the stress associated with racial bias cause many patients with SCD to avoid clinical care, increasing the risk of life-threating complications. Despite this well-known history of inequity, there has been limited patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) into approaches to help providers and healthcare organizations overcome the systems-level barriers to optimal patient-centered care for SCD pain crises.

Proposed Solution to the Problem: The project team will organize two virtual discussions with the same group of stakeholders to create PCOR/CER questions to compare potential systems- and institutional-level interventions to improve SCD pain crisis care. Participants will include individuals who have SCD, caregivers, providers who care for individuals with SCD, SCD researchers, payers, healthcare administrators and an expert in healthcare systems change.

Objectives: The project aims to generate PCOR/CER questions that will help providers and healthcare organizations make systemic changes to better evaluate and care for patients experiencing SCD pain crises in the clinical setting. 

Activities: Prior to the first group discussion, organizers will identify patients and other stakeholders to participate. The first session will focus on community building, developing an understanding of PCOR/CER question creation, and systems-level healthcare reform centered in health equity. The second discussion will focus on identifying PCOR/CER questions addressing systemic issues in SCD crisis care. 

Organizers will review audio recordings and notes to produce a report that will highlight future PCOR/CER needs and questions related to improving SCD pain crisis care, which will be disseminated across the SCD and healthcare research communities.

Projected Outcomes and Outputs: 

Short-term outcomes and deliverables include: 1) a roadmap of future research priorities and needs for supporting SCD pain crisis assessment and management, and 2) dissemination of this roadmap and accompanying materials targeted to stakeholder communities through Massachusetts Health Quality Partners’ (MHQP) and Massachusetts Sickle Cell Association's local, regional and national networks. The project team will also seek opportunities to present the roadmap at institutions across these networks and at regional and national conferences. 

Medium-term (0-2 years post project period) and long-term outcomes (3+ years post project period): MHQP hopes to drive new patient-centered CER on SCD pain crisis care.  

Patient and Stakeholder Engagement Plan: Patient and stakeholder engagement is essential to this project. Individuals who have SCD and their caregivers, providers, researchers, payers, administrators and a healthcare systems change expert will participate in the group discussions. Two patients or caregivers will coproduce background and discussion materials for the meetings. A professional facilitator will lead the discussions.  Research recommendations will be validated by eliciting stakeholder input to confirm research directions are feasible and meaningful. 

Project Collaborators: Massachusetts Health Quality Partners and the Massachusetts Sickle Cell Association will lead this work. 

Project Information

Barbra Rabson, MPH
Massachusetts Health Quality Partners
$98,875

Key Dates

May 2024
2023

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Last updated: April 3, 2024