Study Reveals Top Treatment Priorities in Patients With CLL

Recent study findings, published in BMC Cancer, show the treatment preferences and experiences of people previously treated for chronic lymphocytic leukemia (CLL).¹ Researchers sought to understand patients' experiences, needs, and expectations to identify areas for improvement in treatments and patient care delivery.

The research, completed in Australia between July 2021 and February 2023, consisted of 2 online surveys (stages) completed by patients on different occasions. Stage 1 (n = 25) measured the importance and satisfaction of the different aspects of the health care pathway and involves a best-worst scaling (BWS) task to evaluate 11 health care journey moments that matter (MTM). This phase aimed to generate a patient experience index (PEI) score to gauge overall satisfaction. In stage 2 (n = 30), participants completed a survey that included a discrete choice experiment (DCE) to assess the relative attribute importance of 7 treatment features and another BWS exercise to explore long-term treatment goals. The patient cohort was balanced between those receiving oral and intravenous medications, with similar demographics.

The median (SD) PEI score in stage 1 was 66.2 (14.02) of 100, providing insights into the overall patient experience and revealing areas where health care improvements could be made. MTM were ranked on a scale of 0 (not important at all/not satisfied at all) to 10 (extremely important/completely satisfied). “Access to and effectiveness of medication” (8.98), “health care team quality” (8.07), and “Monitoring and identifying progress or deterioration” (7.63) were the top 3 most important MTM to patients. Patients were least satisfied with “Support for your support person” (5.28), noting that their carer received limited emotional support, especially during the COVID-19 pandemic. Patients also noted lower levels of satisfaction with “Access to other treatments/services” (5.44), “Side effects of medication” (5.74), and “Treatment logistics” (5.77).

Through this study, the researchers wanted to better understand patient experiences, needs, and experiences to improve treatment and care delivery | Image Credit: tashatuvango - stock.adobe.com

The data for the most important and least satisfied were combined, reflecting the top 4 areas where there is room to improve patient care and treatment experience. These include "Access to and effectiveness of medication" (52% of patients reported this as their top 4 least satisfied but most important), followed by “Support for your support person” and “Access to other treatment/support services,” both of which were reported by 48% of patients. Forty-four percent of patients reported “Monitoring and identifying progress or deterioration” as most important, but least satisfied.

The study also explored long-term treatment goals, finding that "the most valued long-term treatment outcome for treatment-experienced patients living with CLL was the ability to be physically healthy,” the authors noted. Living a long life, spending time with family and friends, and avoiding hospitalization were also highly valued.

"Consistent with other studies, patients in Stage 2 of this study prioritized treatments with the longest PFS [progression-free survival] time and lower chance of severe side effects or complication," the authors noted.

The DCE involved questions about hypothetical treatment scenarios that may or may not be available treatment options. The relative importance of 7 attributes were examined, and the results are consistent with previous studies^2,3 that show 24.6% of patients prioritize treatments associated with PFS. Lower risk of severe adverse effects (19.5%) and lower out-of-pocket costs (17.4%) were also important to patients. The remaining weight in decision-making was distributed among attributes like mild to moderate adverse effects (13.4%), long-term risks (12.2%), type of treatment (8.7%), and treatment duration (4.2%). Notably, patients showed a preference for oral over intravenous therapy.

"Consideration and discussion of other attributes, such as once-daily dosing, oral-only medication, out-of-pocket costs, and access to support services may affect patient treatment choices and ultimately enhance their health care experience and outcomes," the study notes.

"The patient voice within CLL is critical to informing patient-centered care, both in terms of their experience with the disease and their choice of therapies. Insights from this research can help support decisions that will enhance the treatment experience of patients with CLL," the authors concluded.

References

1. Fifer S, Godsell J, Opat S, et al. Understanding the experience, treatment preferences and goals of people living with chronic lymphocytic leukemia (CLL) in Australia. BMC Cancer. 2024;24(1):831. doi:10.1186/s12885-024-12589-9

2. Laurenti L, Gaidano G, Mauro FR, et al. What are the attributes prioritized in the choice of therapy in chronic lymphocytic leukemia? a patient-physician cross-matching analysis of a discrete choice experiment. Hemasphere. 2022;6(9):e771. doi:10.1097/HS9.0000000000000771

3. Le H, Ryan K, Wahlstrom SK, et al. Oncologist and patient preferences for novel agents in first-line treatment for chronic lymphocytic leukemia: commonalities and disconnects. Patient Prefer Adherence. 2021;15:99-110. doi:10.2147/PPA.S289139