Authored by Brian Koffman, MDCM (retired), MSEd
Bottom Line:
Oral medications have revolutionized CLL treatment, but success depends on long-term adherence. Patient education and tracking protocols improve outcomes.
Who Performed the Research and Where Was it Presented:
Dr. Javier Pinilla-Ibarz of Moffitt Cancer led a group of investigators, including CLL Society’s Dr. Brian Koffman, in presenting this study at the American Society of Hematology (ASH) Annual Meeting in Orlando in Dec. 2026.
Background:
Oral therapies are often a better, more convenient option for patients with chronic lymphocytic leukemia (CLL), but long-term adherence and persistence are critical and are often suboptimal. “Drugs don’t work in patients who don’t take them” is the famous 1985 quote by former U.S. Surgeon General C. Everett Koop. A multidisciplinary approach is needed to improve outcomes. This study, to help prevent missed doses and better manage adverse events, was done in the community, which is where most CLL patients are cared for, not at academic centers, making this research particularly relevant.
Methods and Participants:
There are multiple parts to this study that were conducted across the US in a community-based oncology network.
It included:
- A baseline survey of 74 CLL care team members.
- A CLL Society-led nationwide survey of 129 CLL patients.
- The two surveys were used to look for coherence between the perceptions of the patients and providers.
- An audit-feedback (AF) session for the clinicians led by CLL expert oncologists who shared survey findings and helped develop next steps.
- After the feedback session with the clinicians, another survey was conducted at 60 days on their success with their action plans to close clinical care gaps and implement actions to improve adherence.
Results:
Baseline:
- Among the patients who had taken or are taking oral medication, 49% reported they never miss or skip a dose.
- 85% and 73% reported high or very high confidence in their ability to take the medication as prescribed and manage side effects, respectively.
- Patients’ assessments of their experience were more closely aligned with the 43 hematologists/oncologists’ assessments of what had been discussed (side effects of treatment and strategies to manage those toxicities) than they were with those of the 31 multidisciplinary providers.
Feedback session:
- Providers reported providing education as the biggest challenge to engaging CLL patients in taking their medication.
- Following the session with the CLL expert, clinicians reported improved confidence in their ability to help when medication adherence needed improvement and to more quickly identify and manage adverse events, including atrial fibrillation.
- Goals were established to better educate patients on their medication and use a standard protocol for follow-up to increase adherence.
- Action plans to achieve these goals include:
- developing a patient medication tip sheet
- formal patient education
- follow-up visits
- monitoring medication refill timing, lab results, and side effect trends to adjust treatment and encourage patients via progress tracking.
- In the 60-day follow-up surveys, all clinics reported high or very high satisfaction in how their team improved support of treatment adherence through education and monitoring.
Conclusions:
Only about half of CLL patients report rarely missing a dose of their oral medication. Though significant gaps remain, oral medication adherence can be improved through education and monitoring.
Link:
You can read the actual ASH abstract here for any many more details: Optimizing adherence to oral CLL therapies in community oncology centers- Key findings from a quality improvement initiative CLLS
Special Thanks: CLL Society is proud to have played an important role in this research and wants to thank the 129 patients who volunteered through our outreach to participate.
