A survey of patients with chronic lymphocytic leukemia (CLL) about multiple treatment scenarios found that while their top priority is longest progression-free survival, they are willing to make sacrifices on a therapy’s effectiveness if it reduces or avoids serious adverse events.
Another important factor to patients in making therapy choices is out-of-pocket expenses, the survey found.
The study, “Patients’ priorities in selecting chronic lymphocytic leukemia treatments,” appeared in the American Society of Hematology journal Blood Advances.
Recent advancements in leukemia research have led to an increasing number of available therapies, each carrying particular benefits, prices, and side effects. Lead study author Carol Mansfield, PhD, of RTI Health Solutions, set out to better understand what most influences patient decision-making.
In collaboration with the Leukemia & Lymphoma Society, the Lymphoma Research Foundation, and Genentech, researchers asked 384 CLL patients to rank five different variables: progression-free survival, mode of administration, typical severity of diarrhea, probability of severe infection, and risk of organ damage.
“While every patient wants the most effective drug with the fewest side effects, most people don’t have that option available,” Mansfield said in a press release. “By asking patients to make tradeoffs and rank their preference, we can form an understanding of how patients approach their treatment.”
Results showed that patients valued a therapy’s effectiveness most, followed by lower risk of serious adverse events. The trade-off for accepting a 30% risk of serious infection was an increase in the time to disease progression or death by 36 months.
How a therapy is administered was the least important factor in patient decision-making.
“This research brings home the point that each patient has unique circumstances and choosing the right treatment means weighing the different efficacy profiles and side effects against the patient’s priorities,” Mansfield said. “A successful outcome can be different from one individual to the next, and the outcome they desire depends on their circumstances.”
Researchers also found that cost is a very important factor when patients choose therapies. In a follow-up questionnaire, patients who were asked to choose between two medicines with different costs, 65% changed their previous choice.
“We used the results from the discrete-choice experiment to forecast the probability that a respondent would pick each hypothetical drug without any mention of cost and then compared that to the choices people made when out-of-pocket costs for these medicines were included,” Mansfield said.
“Cost is clearly something that has an impact. When patients get prescribed something they can’t afford, they have to make very difficult choices,” she added. “We hope that our findings can help doctors to have frank discussions with their patients about the differences between treatments and how these might affect their lives.”
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