Abstract
Background Eligibility assessment of patients with sickle cell disease (SCD) for allogeneic hematopoietic stem cell transplant (HSCT) is a complex yet vital component of pre-transplant evaluation. Psychosocial assessment tools have been modeled after those completed in solid organ transplantation but no studies have validated these tools in this population and therefore a standardized assessment is lacking. Because adult SCD patients face the burdens of chronic disease and racial disparities, we hypothesized that psychosocial frailties would be prevalent in those undergoing HSCT.
Methods Adult patients diagnosed with sickle cell disease who received HSCT between 2014 and 2021 and had a documented pre-HSCT social worker semi-structured qualitative interview addressing patient's living arrangement, family structure, education, employment, financial situation, social habits and understanding about the transplant were included. Our goal was to use these interviews to identify domains of psychosocial frailties and to eventually develop a tool in this SCD patient population that could be used pre-HSCT. Interviews. A codebook was developed by the research team consisting of clinical experts and a qualitative expert. This process was repeated to theme saturation, resulting in a RedCap scoring tool with 12 psychosocial frailty domains related to housing, transportation, interpersonal issues with family, marital status, dependency, unemployed work status, mental health diagnosis, dependence on government subsidies, and the presence of a reliable 24-hour caregiver. Two reviewers independently coded the data from notes into Redcap and discrepancies were addressed with the team.
Results Of the 65 SCD patients who received HSCT, 40 patients met inclusion criteria. The median age at the time of transplant was 29 (18-55) years and 19 patients (47.5%) were male. 21 (52.5%) patients received a haploidentical HSCT, while 19 (47.5%) received a matched relator donor HSCT. Insurance was either private (n=20, 50%), Medicaid for (n=11, 27.5%), or Medicare/Medicaid (n=5, 12.5%). For marital status, 15 (37.5%) were married and 23 (57.5%) were not married. Most patients had either a high school (n=17, 42.5%) or college (n=13, 32.5%) degree. 40% of patients were unemployed at the time of transplant. We then examined the frequency of individual and total psychosocial frailties experienced within each patient and among the entire cohort. In 40 patients, a total of 150 psychosocial frailties existed. The most frequent psychosocial frailties were related to marital status (n=25), government subsidy dependency (n=18), housing dependency (n=18), financial dependency (n=17), unemployed work status (n=16), and any transportation vulnerability (n=17). The median number of psychosocial vulnerabilities experienced by each patient was 4 (range: 0-9), with 10 (25%) patients having more than 5 vulnerabilities. Specific vulnerabilities are listed in Table 2.
After a median follow up of 36.7 (3-101.3) months, there were 3 deaths, with 0, 4, and 9 pre-HSCT psychosocial frailties experienced by each patient. 8 (53%) patients with a psychosocial frailty ≥ 5 were re-hospitalized within 100 days of HSCT.
Conclusions Here we report for the first time an analysis of a qualitative dataset to understand and determine the prevalence of psychosocial frailties that adult sickle cell patients experience during allo-HSCT. We observed a very high number of frailties within the entire cohort including financial and housing dependency, not having a 24-hour caregiver after HSCT, and reliance on government subsidies for support. However, despite these psychosocial frailties, HSCT was successfully performed in these patients and based on this, should not be a barrier to receiving this life-saving procedure. Confirming these findings in a larger cohort in order to assess the impact on survival and specific transplant outcomes is warranted.
Disclosures
Saraf:FORMA Therapeutics: Consultancy, Research Funding; Global Blood Therapeutics: Consultancy, Research Funding, Speakers Bureau; Agios: Consultancy; Novartis: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; ORIC: Consultancy. Mandava:AbbVie Health: Research Funding. Gordeuk:CSL Behring: Consultancy, Research Funding; GBT: Consultancy, Research Funding; GSK: Consultancy; Forma: Consultancy. Patel:Exelixis: Current Employment.
