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Housing and Caregiver Challenges for Hematopoietic Cell Transplant Recipients and Their Potential Solutions: Results from a Mixed-Method Study

Track: Poster Abstracts
Wednesday, February 26, 2014, 6:45 PM-7:45 PM
Longhorn Hall E (Exhibit Level 1) (Gaylord Texan)
Jaime M. Preussler, MS , Patient and Health Professional Services, National Marrow Donor Program, Be The Match, Minneapolis, MN
Navneet S. Majhail, MD, MS , Blood and Marrow Transplant Program, Cleveland Clinic Foundation, Cleveland, OH
Lih-Wen Mau, PhD, MPH , National Marrow Donor Program, Minneapolis, MN
Diane W. Carr, MPH , Patient and Health Professional Services, National Marrow Donor Program, Minneapolis, MN
Margaret Bevans, RN, PhD, AOCN , Clinical Center, The National Institutes of Health, Bethesda, MD
Emilie Clancy , National Marrow Donor Program, Minneapolis, MN
Carolyn Messner, ACSW , Cancer Care, Inc., New York, NY
Leslie Parran, MS, RN, AOCN, NE-BC , BMT, University of Minnesota Medical Center, Minneapolis, MN
Kate Pederson, MSW , Patient and Health Professional Services, National Marrow Donor Program, Minneapolis, MN
Stacy Stickney Ferguson, MSW, LICSW , Patient and Health Professional Services, National Marrow Donor Program, Minneapolis, MN
William Vaughan, MD , Bone Marrow Transplantation and Cell Therapy Program, University of Alabama in Birmingham, Birmingham, AL
Kent Walters, MBA, CMPE , Stem Cell Transplantation and Cellular Therapy, The University of Texas MD Anderson Cancer Center, Houston, TX
Elizabeth Murphy, EdD, RN , Patient Services, National Marrow Donor Program, Minneapolis, MN
Ellen Denzen, MS , Patient and Health Professional Services, The National Donor Marrow Program (NMDP), Minneapolis, MN

Patients undergoing hematopoietic cell transplantation (HCT) and their caregivers and families frequently need to temporarily relocate closer to the transplant center (TC). Additionally, patients are often required to have a caregiver to proceed with HCT. If continuous caregiver support is not available, HCT may not be an option. To learn more about and to characterize temporary housing and caregiver challenges for autologous and allogeneic HCT recipients and the solutions that TCs utilize to address them, we conducted telephone focus groups, followed by a web-based survey of HCT social workers. Three telephone focus groups were conducted with social workers who work with HCT recipients (15 participants). Qualitative analysis of responses identified several temporary housing and caregiver availability issues (Figure 1). The focus group results informed the design of a national survey. The online survey was administered August-October 2013 to a primary HCT social worker (or other designated member of the care team) at NMDP Network TCs in the United States (N=139). Respondents were asked to complete the survey based on their experience at the TC within the past year. The response rate as of 9/30/13 is 35%.

Among adult programs (N=31), 94% of TCs had patients that relocated closer to the TC to proceed with HCT. 42% of allogeneic TCs had distance requirements, ranging from 5 to 90 miles, and 71% had time requirements, ranging from 10 to 120 minutes. Social workers spend a median of 4 hours (range: 1-15) a week addressing housing needs. The most common type of housing option offered was discounted hotel rates. 61% of centers provided housing assistance funds. 90% of TCs require a caregiver to proceed to HCT, and social workers dedicated a median of 4.5 hours (range: 1-15) per week to identifying a caregiver. When asked to identify the approximate percent of patients who did not have a caregiver, a median of 5% (range: 1-30) was identified. 48% of TCs use a caregiver contract.

Among pediatric programs (N=15), 87% of TCs had patients that relocated closer to the TC to proceed with HCT.  67% of allogeneic TCs had distance requirements, ranging from 8 to 100 miles, and 67% had time requirements, ranging from 20 to 90 minutes. Social workers spent a median of 3 hours (range 1-10) a week addressing housing needs. Ronald McDonald House was the most common type of temporary housing available. 93% of TCs provided housing assistance funds to patients. 86% of TCs require a caregiver to proceed to HCT, and social workers dedicated a median of 2.5 hours (range: 0.5-8) per week to identifying a caregiver. 40% of TCs use a caregiver contract.

Preliminary results from our study show wide variation in temporary housing and caregiver requirements at TCs to proceed with HCT. These issues can present as a major barrier to HCT for patients. Additional analyses from the survey will identify solutions that TCs use to address housing and caregiver issues.

Disclosures:
Nothing To Disclose
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