Despite recent therapeutic advances, retrospective analyses show that racial minorities are not equally benefiting from them. For example, Black and Hispanic patients with acute myeloid leukemia (AML) have higher mortality rates than non-Hispanic whites, with widening differences in the past three decades. Other studies have identified some of the potential mediating factors, but they are somewhat limited by their retrospective nature.1-4
As part of the 65th ASH Annual Meeting and Exposition, Eshana Shah, MD, a hematologist at Yale University School of Medicine in New Haven, Connecticut, discussed early results from a prospective study linking patient-reported social determinants of health (SDOH) to treatment delivery, complications, and outcomes in acute leukemia and myelodysplastic syndromes (MDS).5
The team studied adult patients with aggressive hematologic malignancies including AML, acute lymphoblastic leukemia (ALL), and high-risk MDS, enrolling them within three months of starting treatment. They plan to perform two years of longitudinal assessment, employing a mixed-methods approach combining quantitative and qualitative data.
The project included semi-structured patient interviews to get patients’ perspectives on how their disease has affected their personal life and a patient survey on different aspects of demographics. It also included validated questionnaires to evaluate financial toxicity (Comprehensive Score for Financial Toxicity–Functional Assessment of Chronic Illness Therapy [COST-FACIT]), health literacy (Cancer Health Literacy Test-6 [CHLT-6]), and mental health (Patient Health Questionnaire-4 [PHQ-4]). Researchers will also analyze data from electronic medical records with respect to treatment, complications, and disease-specific outcomes.
To date, the team has collected data from 60 patients, a group that Dr. Shah noted is diverse with respect to participants’ ethnicity, neighborhood, income, education, and insurance source. During the presentation, Dr. Shah shared some preliminary data; additional information from analyses of a smaller 52-patient subgroup is available in the abstract.5
Dr. Shah noted that 25% of patients missed a clinic visit within the first six months. Patients who were 65 or older were more likely to miss clinic visits at a rate that achieved statistical significance. Around two-thirds of patients had an ER visit, and about two-thirds of those visits required hospital admission. About one-third of patients needed at least some care in the ICU.
Using the COST-FACIT, the team noticed a trend between poor scores for financial health and ER visits, as well as an association for missed clinic visits, although neither of those has reached statistical significance to date (p=0.09 and p=0.6, respectively). However, the qualitative data show that patients worry about keeping their jobs, paying for household expenses, and covering unexpected medical bills. Almost half report a lack of control over medical expenditures, and around a quarter reported feeling somewhat or very much financially stressed.
Similarly, the team has observed a statistically significant trend connecting poor health literacy via the CHLT-6 with missed clinic visits (p=0.027) and need for ICU care (p=0.026), with a non-statistically significant trend for ER visits (p=0.08). “So health literacy was mitigating some of the risks of early adverse outcomes,” said Dr. Shah.
Dr. Shah also said that although they have not found an association between the PHQ-4 score and outcomes such as missed clinic visits or ER encounters, many patients reported difficulties coping with the diagnosis and feeling isolated.
“The ultimate goal of the project is to gain knowledge to help devise mitigation strategies to reduce disparities,” Dr. Shah said. This might include implementing SDOH tools to identify vulnerable patients, triaging patients who are at risk, especially patients 65 years or older, to additional resources, increasing caregiver engagement, producing tailored educational tools for people with different cultural and educational backgrounds, and building community partnerships.
Any conflicts of interest declared by the authors can be found in the original abstract.
References
- Abraham IE, Rauscher GH, Patel AA, et al. Structural racism is a mediator of disparities in acute myeloid leukemia outcomes. Blood. 2022;139(14):2212-2226.
- Bhatnagar B, Kohlschmidt J, Mrózek K, et al. Poor survival and differential impact of genetic features of Black patients with acute myeloid leukemia. Cancer Discov. 2021;11(3):626-637.
- Larkin KT, Nicolet D, Kelly BJ, et al. High early death rates, treatment resistance, and short survival of Black adolescents and young adults with AML. Blood Adv. 2022;6(19):5570-5581.
- Winestone LE. Naming racism: the first step. Blood. 2022;139(14):2098-2099.
- Shah E, Rodriguez AMA, Luo JW, et al. Individual-level social determinants of health (SDOH) measures and treatment complications in acute leukemia. Abstract 374. Presented at the 65th American Society of Hematology Annual Meeting; December 9, 2023; San Diego, California.
