Can You Spare 100 Days? The Allogeneic Hematopoietic Cell Transplant Caregiver Requirement

Abstract

Allogeneic hematopoietic cell transplantation (alloHCT) is a potentially curative treatment for patients diagnosed with blood cancers (e.g., acute myeloid leukemia), and blood disorders (e.g., sickle cell disease). It is a resource intensive treatment that generally requires a long hospital stay and recovery period. Patients are often required to have a caregiver to proceed with alloHCT, and if continuous caregiver support is not available, alloHCT likely will not be a treatment option. Few studies have described caregiver requirements or looked at the effect of these requirements on access to alloHCT. To learn more about caregiver requirements and perspectives on those requirements, we conducted web-based focus groups with alloHCT social workers who worked with adult patients at United States (US) transplant centers (TCs) from May-July 2022. Web-based interviews with adult alloHCT recipients, caregivers of adult alloHCT recipients, and physicians/advanced practice professionals (APPs) will also be conducted. Twenty-two social workers from TCs across the US (Midwest [n=8]; West [n=5]; Northeast: [n=5]; South, [n=4]) and with varying alloHCT volumes (median: 97 alloHCTs performed per year [range: 25-487]). All of the social workers noted their TC required a caregiver to proceed to alloHCT. However, there was variation across TCs around the length of time a recipient was required to have a caregiver. Other variations included the distance/time needed to stay near the center post-alloHCT and COVID-19 vaccination requirements for patients/caregivers. The majority of participants noted variance among the transplant team in allowing exceptions for caregiver requirements. The majority of participants noted their TC either did not allow patients to hire caregivers from an agency or discouraged this practice; and if it was allowed, noted it rarely occurs due to the large cost. Some of the participants noted that the requirements were developed by quality or legal teams with input from the transplant team, but some of the participants did not know where the requirements originated. All participants noted it would be helpful to have a 'gold standard’ of requirements across TCs, though there was discussion about what these standards would include, and the importance of flexibility to account for different patient and TC needs. Participants noted the number of patients that do not proceed to an alloHCT due to lack of a caregiver is generally 1-2/year; one participant noted, "I do have worries that patients aren't being referred who don't have caregivers, and we just don't know about them and they're falling through the cracks.” Social workers were also asked to identify patient barriers to meeting the caregiver requirement; common barriers included patients feeling they did not have anyone to ask to be a caregiver, the need for housing/relocation close to the TC, and financial barriers. They also noted the impact of the COVID-19 pandemic (e.g., vaccination requirements of the TC or lodging options, and increased telework which allowed for more flexibility for caregivers). Finding a caregiver is one of many barriers patients face in getting to transplant. In analysis of the first of four populations interviewed in this study, social workers reported variation in caregiver requirements across TCs. This study focused on those who received a transplant, but further research is necessary to learn about barriers faced by patients who are unable to get to alloHCT. Results from this and the other cohorts will describe current practices and help inform the development of new programs at the National Marrow Donor Program/Be The Match focused on reducing caregiver-related barriers to alloHCT.