Authored by Brian Koffman, MDCM (retired), MSEd
Bottom Line:
CLL patients who take oral cancer drugs frontline experience significant financial toxicity and less-than-ideal medication adherence that gets worse over time.
Who Performed the Research and Where Was it Presented:
Jessica M Allen, MD of the University of Colorado School of Medicine, Aurora, CO, and colleagues presented the results at the American Society for Hematology (ASH) Annual Meeting 2024.
Background:
Oral therapies have revolutionized the care of chronic lymphocytic leukemia / small lymphocytic lymphoma patients, but they can be associated with significant costs. This study looked at how the high cost of these medications, when taken as the first line of therapy, affected CLL / SLL patients in terms of financial toxicity (FT), health-related quality of life (HRQoL), and medication adherence (taking the meds as prescribed and not missing doses).
Methods:
Patients from two academic centers who were taking oral medications as the first-line therapy for their CLL or SLL were assessed with Patient-Reported Outcomes (PRO) at baseline, three, and six months.
Validated surveys with all 47 patients and semi-structured interviews with 10 were used to assess the following:
- Financial toxicity
- Health-related quality of life
- How well patients are taking their medication as prescribed (medication adherence)
Results:
Patient Characteristics:
- The average age was 66 years, with 53% male, 9% Black, and 6% Hispanic.
- Approximately half received a BTK inhibitor, most commonly acalabrutinib and zanubrutinib.
- Forty-seven percent had Medicare, and 45% used private insurance.
- Two out of three had no copay.
- Most received grants or were enrolled in patient assistance programs (PAP) to help with costs.
- PRO completion rates were 100% (baseline), 85% at three months, and 83% at six months.
Outcomes:
- Significant FT was observed in 22% at the start of the trial and increased over time.
- Worse FT was seen in patients who were:
- Hispanic
- Black
- Unemployed
- Lived closer to their cancer center
- FT was strongly associated with worse health-related quality of life.
- FT was associated with inferior medication adherence.
- Poor adherence to medications was associated with inferior functional well-being and with inferior social well-being.
- Surprisingly, there were no significant correlations with FT or adherence and no copay or PAP support.
Interview Outcomes:
- Ten patients were interviewed.
- Most had no out-of-pocket costs aside from deductibles.
- Many seemed worried about what might happen down the line, reporting uncertainty around future funding and/or losing access to patient assistance programs.
- All said they rarely missed doses and were good about taking their medications.
Discussion:
It’s not surprising to learn that patients on expensive oral medications frontline are at risk for early and worsening FT and for not taking their medication as prescribed. Surprisingly, having no copay and enjoying good financial support through patient assistance plans make no difference in the risk of FT and suboptimal adherence. This suggests that it’s not just the expense of the drugs that is driving the FT. The interviewees shared that the worry was about the fear of losing future financial help. This suggests that looking for ways to bolster confidence in the long-term reliability of financial aid might help. It’s important because worse FT and nonadherence were significantly associated with worse health-related quality of life measures.
Finally, financially validated measures of adherence tell a different story about how well the medications are taken as prescribed than when the patient just answers a question about skipped doses. The patients tend to think they are doing better about not missing doses than what is reported with the more detailed measuring instruments.
Links and Resources:
Listen to Dr. Koffman’s monologue below.
The original ASH abstract is Financial Toxicity, Health-Related Quality of Life, and Medication Adherence Patient-Reported Outcomes (PROs) in Patients with Chronic Lymphocytic Leukemia (CLL) on First-Line Oral Oncolytics.
