Perceptions of Treatment Tolerability and Its Relationship to Income in Patients with Hematologic Malignancy: Findings from the Cancer Experience Registry

Background: Hematologic malignancies (HM) often require therapies associated with a range of bothersome symptoms, side effects, and impacts. Clinical researchers typically consider tolerability in terms of physical tolerability (adverse events, AEs), but treatment requires commitment of time and resources, and thus financial tolerability and other patient factors must also be a consideration. This study aims to understand patients’ perceptions of treatment tolerability and how these perceptions might be related to income.

Methods: A total of 118 people with HM participated in the Cancer Experience Registry (CER) online survey between November 2021 and June 2024 and provided sociodemographic and clinical information. Participants were asked how important (on a 5-point scale from 1=Not at all to 5=Very much important) are various aspects of tolerability. In total 11 aspects were considered; 2 items related to cure/progression, 2 symptoms/side-effects, 2 access, 2 emotional well-being, and 3 related to treatment regimen. Chi-square analysis was utilized to assess group differences among tolerability items based on those reporting low (<$40K) vs. high ($40K+) annual household income.

Results: The sample (66 women, 50 men, 2 preferred not to share gender) was 89% Non-Hispanic (NH) White, 5% NH Black/African American, and the remaining percent multiple or other races. Participants’ age ranged from 26-87 years old (M=67, SD=11); 20% reported household income <$40K; 72% had an associate’s degree or higher; 24% were employed (temporary, part time, or full time), 55% retired, 13% not employed due to disability, and 8% not employed due to other reasons. The median time since primary cancer diagnosis was 8 years (range: 2-26; IQR: 5-14), with 43% currently receiving treatment, 19% recovering from treatment, and 27% in watch and wait surveillance. Participants’ diagnosis included 20% Myelodysplastic Syndrome, 20% non-Hodgkin’s Lymphoma, 18% Multiple Myeloma, 14% Chronic Lymphocytic Leukemia, 9% Chronic Myeloid Leukemia, ≤5% other types of leukemias, lymphomas, or myelofibrosis, and 5% with more than one HM. When evaluating treatment’s tolerability, participants considered relief from symptoms (98% endorsed as somewhat to very much important), ability to slow disease progression (98%), and side effect of treatment (97%) as top three most important factors, both in low- and high-income groups. Those reporting a low income (n=24) were more concerned than those with high income (n=71) with cost/affordability (88% vs. 76%, respectively), how (oral vs. injection) treatment is given (75% vs. 59%) and how often treatment is given (75% vs. 61%), but these differences were not statistically significant. Chi-square analysis revealed trends that those with low income prioritize the impact of treatment on emotional well-being (96% vs. 79%; X²=3.684, p<.10) and where (in clinic or at home) treatment is given (79% vs. 59%; X²=3.126, p<.10) vs. those with high income.

Conclusion: When considering tolerability of treatment, those with HM are primarily concerned about relief from symptoms, ability to slow disease progression, and side effects of treatment, regardless of income level. However, the current findings indicate a possible interplay between income and factors related to treatment accessibility, including cost/affordability of treatment, how, where, and how frequently treatment is given. Additionally, the impact of treatment on emotional well-being was more heavily prioritized in the low-income group, which should be taken into consideration when aligning patients with support services and resources. Despite large deviations in group percentages, the small sample size in the current analysis could be limiting the ability to achieve statistical significance. Given the potential impact of tolerability on other aspects of the patient experience, including treatment adherence as well as other physical, mental, and social outcomes, the relationship between income and tolerability warrants continued investigation.