Patients with chronic lymphocytic leukemia (CLL) primarily rely on their physicians for “information about their disease and its management,” but had low awareness of different CLL risk groups, according to a recent study.
Constantine S. Tam, MD, of the Peter MacCallum Cancer Centre at the Royal Melbourne Hospital of University of Melbourne, and colleagues conducted the study and presented interim results at the 2022 American Society of Hematology Annual Meeting.
Dr. Tam and colleagues conducted the survey to “better understand what CLL patients know about their disease, their perspectives on diagnosis and treatment, and their unmet needs to ultimately improve their care and outcomes,” they wrote.
Clinicians and representatives of patient advocacy groups prepared a questionnaire and distributed it in multiple languages to patients with CLL across the world. The researchers began collecting survey responses in March 2022 and conducted an interim analysis of data collected through July 1, 2022, with 118 responses collected at that time. The study is planned to continue through 2022, with a goal of accruing 1,100 responses.
Most patients (62%) were “were unaware or unsure of the existence of different [CLL] risk groups and an equal proportion reported they had not received information about risk groups from educational courses,” Dr. Tam and colleagues reported. Furthermore, 63% were not aware of laboratory tests that can determine risk, and 67% were not aware of the treatment implications of different risk levels.
“Despite this lack of awareness, 74% of respondents believed it was important to test all patients to determine their risk,” the study’s authors wrote.
Nearly all (87%) of patients preferred oral medications to intravenous medications. Similar proportions of patients prefer fixed duration treatment (54%) and treatment until progression (47%). While nearly all (88%) patients wanted to be involved in their treatment decisions, only 65% participated in their treatment decisions.
However, 21% of patients reported “they had not received enough information about CLL to make informed treatment decisions,” with 14% of patients “unable to obtain answers to their questions on the subject,” according to the researchers. Most patients (74%) relied on their physicians to answer their questions, but 10% used online sources or social media, while 1% used educational materials or treatment centers to answer their questions.
Nearly all (91%) of patients discussed treatment side effects with their physicians, with 42% seeking additional information, and 28% reporting they would stop their treatment if “they experienced unbearable side effects,” which occurred in 12% of those who responded.
“Among those that stopped treatment for these reasons, 76% believed their control of their CLL suffered,” Dr. Tam and colleagues wrote. “Notably, 92% of respondents were not worried about discussing side effects with their clinicians for fear of treatment discontinuation.”
More than half (56%) of patients reported that unavailability of treatment had “a high impact on treatment discontinuation,” while 36% reported financial issues had the same effect.
Nearly all (95%) patients received a COVID-19 vaccine, and 78% “reported that their treatment was not negatively impacted by the [COVID-19] pandemic,” according to Dr. Tam and colleagues.
“These interim results suggest that despite the wide availability of information online, CLL patients rely on their physicians for information about their disease and its management. This unexpected high level of trust could be related to the advanced age and diminished internet access in this population,” Dr. Tam and colleagues concluded. “The lack of awareness about risk groups and their treatment implications highlights an educational gap. Likewise, the preferences to receive oral treatments and participate in treatment decisions may point to unmet needs among CLL patients. These results indicate that most CLL patients are satisfied with the amount of information they receive from clinicians, but many awareness gaps suggest better patient education is needed.”
Tam CS, Ibarz JP, Karakus V et al. Preliminary Results of Voice (Virtual Opinions poll Independent Centered on CLL patients’ Experience): A Global Survey to Assess the Disease-Specific Knowledge and Perspectives of Real-World Patients with CLL. Abstract #3540. Presented at the 64th ASH Annual Meeting and Exposition; December 10-13, 2022; New Orleans, Louisiana.