Engaging Stakeholders to Address Allogeneic Hematopoietic Cell Transplant Caregiver Requirement Barriers

Transplant center (TC) caregiver requirements can be a significant barrier to accessing allogeneic hematopoietic cell transplant (alloHCT). These requirements vary across United States TCs, compounding and complicating our understanding of their impact. Historically, patients and other key stakeholders have not been engaged in HCT patient-centered outcomes research (PCOR). NMDP sponsored Reimagining Caregiving Together, Engagement to Address Caregiver Requirement Barriers , a series of workshops, funded by PCORI (Patient Centered Outcomes Research Institute). Project aims are to: 1) convene and engage a diverse group of stakeholders to promote discussion of challenges and solutions to caregiver requirements, and 2) develop a PCOR/comparative effectiveness (CER) agenda. The first workshop, focused on “Defining the Problem & Developing Key Messages”, was held in-person in Minneapolis, MN, October 3-4 th , 2024. Discussion focused on caregiver requirements, identifying a vision for safe post-HCT care and barriers to that vision; and planning for communication and next steps. Evaluation surveys were conducted pre- and post-workshop. Participants (n=33) represented patients, caregivers, clinicians, payers, social workers, advocacy groups, technology, and industry. Multiple activities were used for engagement and to promote discussion, including individual brainstorming, small and large group discussion, interactive polls, and a gallery walk (participants could move around, view, and add comments to documentation). The safe post-HCT care vision included ideas focused on changing the current caregiver requirement paradigm, formalizing resources, establishing and implementing standards, and having systematic assessments and tailored interventions for both patients and caregivers (Figure 1). Barriers to achieving the vision included availability of funding, limited data and evidence, competing priorities, system complexity, and status quo. Prior to the workshop, 23% strongly agreed that all patients should have a caregiver 24/7, for at least 100 days post-HCT to proceed with HCT. After the workshop, 3% strongly agreed with this statement. Post-workshop survey results noted that all participants agreed/strongly agreed that they were better able to understand caregiver requirements from different stakeholder perspectives. Everyone felt their ideas were both heard and respected. Stakeholder engagement can help identify areas for PCOR/CER. Multiple engagement activities were used throughout the workshop. Groundwork laid in this first workshop will inform coordinated efforts to share this information with additional stakeholders and hear their perspectives. A second workshop, to be held in May 2025, will further define a PCOR/CER research agenda related to caregiver requirements and safe post-HCT care.