Self-Reported Financial Difficulties Among Patients with Multiple Myeloma and Chronic Lymphocytic Leukemia Treated at U.S. Community Oncology Clinics (Alliance A231602CD)
Authors: Conti Rena M. , McCue Shaylene , Dockter Travis , Gunn Heather J. , Dusetzina Stacie B. , Bennett Antonia V. , Rapkin Bruce , Gracia Gabriela , Jazowski Shelley , Johnson Michelle , Behrens Robert , Richardson Paul , Subbiah Niveditha , Chow Selina , Chang George J. , Neuman Heather B. , Weiss Elisa S. 
Published: September 2024

Objectives

To estimate the proportion and correlates of self-reported financial difficulty among patients with multiple myeloma (MM) or chronic lymphocytic leukemia (CLL).

Setting

23 U.S. community and minority oncology practice sites affiliated with the National Cancer Institute Community Oncology Research Program (NCORP).

Participants

521 patients (≥18 years) with MM or CLL were consented and 416 responded to a survey (completion rate=79.8%). Respondents had a MM diagnosis (74.0%), an associate degree or higher (53.4%), were White (89.2%), insured (100%) and treated with clinician-administered drugs (68.0%).

Interventions

Observational, prospective, protocol-based survey administered in 2019-2020.

Primary and secondary outcome measures

Financial difficulty was assessed using a single-item standard measure, the EORTC QLQC30: “Has your physical condition or medical treatment caused you financial difficulties in the past year?” and using an ‘any-or-none’ composite measure of 22 items assessing financial difficulty, worries and the use of cost-coping strategies. Multivariable logistic regression models assessed the association between financial difficulty, diagnosis, and socioeconomic and treatment characteristics.

Results

16.8% reported experiencing financial difficulty using the single-item measure and 60.3% using the composite measure. Most frequently endorsed items in the composite measure were financial worry about having to pay large medical bills related to cancer and difficulty paying medical bills. Financial difficulty using the single-item measure was associated with having MM versus CLL (adjusted odds ratio [aOR], 0.34; 95% CI, 0.13-0.84;P=.02), having insurance other than Medicare (aOR, 2.53; 95% CI, 1.37-4.66;P=.003), being non-White (aOR, 2.21; 95% CI, 1.04-4.72;P=.04), and having a high school education or below (aOR, 0.36; 95% CI, 0.21-0.64;P=.001). Financial difficulty using the composite measure was associated with having a high school education or below (aOR, 0.62; 95% CI, 0.41-0.94;P=.03).

Conclusions

U.S. patients with blood cancer report financial difficulty, especially those with low socio-economic status. Evidence-based and targeted interventions are needed.

Study Strengths and Limitations

Strengths

NCORP, a program of the National Cancer Institute (NCI), is a national network for cancer clinical trials and care delivery studies that is comprised of 7 research bases and 46 community sites across the U.S., 14 of which are designated as Minority/Underserved community sites. The study had strong engagement and participation across diverse NCORP Sites across the country and their affiliates. Strong site engagement resulted in high patient recruitment and retention rates for this study (79.8%), despite coincident timing with the initial stages of the COVID-19 pandemic.

The survey tool was composed of previously validated items that were modified for this population and new questions that were evaluated for comprehension, which facilitates comparison of our findings to others previously published. Patients targeted for recruitment were treated in the community and recruitment aimed to represent the socioeconomic characteristics of the prevalent patient population. The study relied on both self-report and medical chart abstraction to establish key dependent and independent variables.

The primary outcome variable was a previously developed, and empirically tested measure, supporting study internal and external validity. We also used a secondary composite measure of financial difficulty to present a more holistic picture of how cancer diagnosis and treatment impact patients’ daily lives and inform decisions to delay or forego care and use cost-coping strategies. By capturing specific worries, decisions and strategies, the composite measure indicates areas where there is a need for greater patient engagement and resource provision at the site of care.

Limitations

Among 105 participants who were not included in the final sample, the majority (n=66) were excluded from analysis because they could not be contacted within the 8-week period due to unexpectedly high recruitment volumes across sites.

While NCORP sites from across the country participated in the study, 60% of patients recruited to the study were from the Midwest. Although this is the most representative study of financial difficulty in U.S. blood cancer patients to date, our findings may not be fully generalizable to the national CLL and MM communities due to these limitations.