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

Background: Chronic lymphocytic leukemia (CLL) is one of the most common lymphoid cancers and predominantly affects older people.1 We conducted this global 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. Methods: A questionnaire was prepared by clinicians and representatives of patient advocacy groups and was distributed in multiple languages worldwide to current or previously treated CLL patients. Patients completed the questionnaire independently or with assistance via an electronic platform, digital questionnaire (.pdf), or paper form starting on March 2022. Responses were anonymous and no identifiable information was collected. This interim analysis includes data collected until July 1st, 2022; the survey will continue until the end of 2022 with an accrual goal of 1100 survey responses. Results are reported as absolute numbers (N) and percentages. The number of answers received varied by question due to the voluntary nature of the survey and optional questions. Results: As of July 1st, 2022, the questionnaire was completed by 118 patients from Europe, Latin America, USA, and Turkey. Regarding patients’ understanding of the heterogeneity of CLL, 62% were unaware or unsure of the existence of different risk groups and an equal proportion reported they had not received information about risk groups from educational courses (Table 1); similarly, 63% and 67% reported lack of awareness about laboratory tests to determine risk and 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. Oral medications were preferred to intravenous by 87% of patients and they were split between fixed duration and treatment until progression preferences (54% vs 47%). As for the patients’ role in managing their CLL (Table 1), 21% reported they had not received enough information about CLL to make informed treatment decisions and fewer (14%) were unable to obtain answers to their questions on the subject. Almost three-quarters of respondents (74%) relied on their physicians to answer their questions about CLL and its treatment, but notably 10% used online sources or social media, and only 1% used educational materials or treatment centers. Most patients (88%) wanted to be involved in treatment decisions, but fewer participated in their treatment decisions (65%). Regarding the impact of COVID-19 on CLL patients, 78% of respondents reported that their treatment was not negatively impacted by the pandemic (Table 2); although 95% of respondents received COVID-19 vaccines, over 1 in 10 (12%) was unaware that CLL increased their vulnerability to infections. In terms of comprehension of risks and benefits of treatment, most patients (91%) discussed treatment side effects with their physicians; however, 42% were seeking additional information. As for treatment discontinuation, 28% of patients indicated they would stop their treatment if they experienced unbearable side effects, and 12% had experienced such side effects. Among those that stopped treatment for these reasons, 76% believed their control of their CLL suffered. Notably, 92% of respondents were not worried about discussing side effects with their clinicians for fear of treatment discontinuation. Finally, 56% and 36% of respondents indicated treatment unavailability and financial issues had a high impact on treatment discontinuation. Conclusions: 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. 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. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal