New Research Highlights Divergent Priorities and Communication Gaps in Relapsed CLL Care

Treatment efficacy was the dominant concern on both sides of the exam room, for patients and physicians alike, according to a new cross-sectional study published in Acta Haematologica that sheds new light on the shared and sometimes divergent priorities that drive treatment decisions for individuals with relapsed/refractory chronic lymphocytic leukemia (R/R CLL).¹

This study surveyed 100 patients with R/R CLL (33% each <64 years, 65-74 years, and ≥65 years) and 100 physicians who treat the disease, probing the factors each group weighs when selecting therapy following progression on a covalent Bruton tyrosine kinase (BTK) inhibitor. Findings reveal a notable communication gap that may be undermining an otherwise collaborative care model.

The cohorts were recruited from market research panels between November and December 2023. Among the patients, their mean (SD) age at diagnosis was 65 (16) years, mean overall age at survey completion was 68.0 (14.3) years, 90% were White, 60% were male, and the most common comorbidities were hypertension (42%) and heart disease (20%).

Where Patients and Physicians Agree But Priorities Diverge

Five question domains were evaluated: current and past treatment information, satisfaction and use of available treatment options, factors considered during treatment decisions, levels of involvement in the decision-making process, and discussions with doctors about treatment.

Among patients who considered treatment-related characteristics (78%), how well a drug might work was the top factor, cited by 60.3%. Physicians echoed this, but to a greater level, with 91.1% of those considering efficacy and safety citing overall survival and 83.5% citing progression-free survival or time to next treatment. Adverse effects (AEs) ranked second for both groups as well. Among patients, 55.1% flagged potential AEs as a key consideration, and physicians zeroed in on the most clinically serious AEs: arrhythmia (82%), high-grade bleeding risks (72%), immunosuppression or infection (66%), and cytopenias (64%).

Both groups also reported a shared decision-making dynamic. Eighty-five percent of patients said they preferred a collaborative process with their doctor, and none wanted their physician to make the final call without any of their input. Physicians reported that 85% of their patients were involved in the decision-making process.

Despite the common ground, the study identified meaningful differences in what each group emphasizes beyond efficacy and safety. Financial considerations loomed large for patients: 53% said cost factors influenced their treatment choice, with 79.2% of this group specifically worried about monthly out-of-pocket expenses. Patients also ranked the total economic impact on their family as the most important financial factor (71.7%). Physicians, by contrast, considered financial factors less frequently—only 37% reported doing so—suggesting a potential disconnect in how financial burden is surfaced during clinical discussions.

On the physician side, medical history dominated patient-specific considerations: 65% of physicians weighed comorbidities, TP53 mutation status, and fitness when selecting treatment, factors that patients did not highlight as prominently in their own decision-making.

Treatment Sequencing and Unmet Needs

Perhaps the most striking finding was what happens, or fails to happen, during the clinical conversation. Although physicians generally scored well for explaining their treatment rationale and involving patients in decisions, the authors noted that only 29% of patients reported their physicians “answered all my questions in a way I understood.”

The authors were direct about what that number means, explaining there is “an unmet need for improved communication during treatment discussions with patients and physicians,” and they called for future research to identify specific areas for improvement. Nearly a quarter of patients (24%) also wished their doctor had discussed future treatment options beyond the current therapy.

The survey also captured physician preferences for treatment sequencing in patients without a TP53 mutation. Physicians generated 62 unique treatment sequences across 3 lines of therapy, underscoring the complexity of decision-making in this setting. Covalent BTK inhibitors dominated first-line selections (39%), while venetoclax plus anti-CD20 monoclonal antibody therapy was the most common second-line choice (35%). For third-line treatment, 47% of physicians selected pirtobrutinib, a noncovalent BTK inhibitor that has yet to be approved by the FDA.²

Physician satisfaction with available options told a similar story of unmet need. Although 76% of physicians reported being satisfied with treatment options overall, satisfaction dropped to 50% for options available following both covalent BTK inhibitor and BCL2 inhibitor use. Among dissatisfied physicians, 86.4% cited low efficacy of available options as the primary driver.

Clinical Takeaways

The findings affirm that shared decision-making is the norm in R/R CLL care, but they also make clear that “shared” does not automatically mean “complete.” For clinicians, the data point toward a practical opportunity: Proactively addressing out-of-pocket costs, future treatment pathways, and patient comprehension could meaningfully improve the treatment experience for a population navigating some of the most complex therapeutic decisions in hematologic oncology.

References

1. Coombs CC, LeBlanc TW, Winfree KB, et al. Treatment decision-making for individuals with relapsed/refractory chronic lymphocytic leukemia (CLL) in the United States. Acta Haematol. 2026:1-21. doi:10.1159/000552243
2. Shaw ML, Rogers K. Breaking down frontline BTK inhibitor selection in CLL: Kerry Rogers, MD. AJMC^®. May 7, 2026. Accessed May 15, 2026. https://www.ajmc.com/view/breaking-down-frontline-btk-inhibitor-selection-in-cll-kerry-rogers-md