What Are Patients' Preferences and Satisfaction Regarding Modes of Administration for the Treatment of Chronic Lymphocytic Leukemia (CLL), Diffuse Large B-Cell Lymphoma (DLBCL), and Follicular Lymphoma (FL)?

OBJECTIVES: In recent years, there has been an increase in the number of treatments with different administration modes for patients with CLL, DLBCL, and FL, providing patients with options that were previously unavailable. However, there is a dearth of quantitative evidence for how patients make decisions when choosing treatments and on patients' opinions regarding the burden of disease, treatment, and satisfaction with processes involved in treatment. We developed a survey to understand patient experiences, preferences, and factors that contribute to decision making. This study aims to quantify patient-reported information via standard survey items with categorical Likert options that measure aspects of satisfaction with patients' most recent treatment. Additionally, patient preferences for various modes of treatment administration will be measured through direct assessment.

METHODS: To design the survey, a rigorous approach consisting of consultation with medical experts, patient advocacy organizations, and research team members was undertaken. Additionally, concept elicitation and cognitive pretesting with patients yielded important attributes to measure, including satisfaction with and preference for various aspects of treatment, treatment schedule and burden, travel time, work productivity and caregiver impact. A particular focus was given to the impact of disease and treatment on health-related quality of life. Specific topics in this category included impact on energy levels, sleep, concentration, emotional health, personal relationships, anxiety and uncertainty, and optimism about future health status.

RESULTS: The draft survey questionnaire was developed and pretested in semistructured interviews with patients (n = 14). Four patients with CLL, 5 patients with DLBCL, and 6 patients with FL were interviewed. Eight patients were male and 6 were female, and mean patient age was 59 (range: 33-74). Interview results suggested that patients experience a significant time burden related to the treatment of their disease. All survey items (including those addressing preferences for treatments based on duration and level of satisfaction with various time and resource dependent treatment characteristics) were refined during the interviews. The final survey is currently being administered online to patients who are associated with The Leukemia & Lymphoma Society and The Lymphoma Research Foundation. We anticipate surveying 500 patients, with results ready for the 2018 American Society of Hematology Annual Meeting.

CONCLUSIONS: Evaluations of patient satisfaction, preferences, and priorities are increasingly important as patients are enabled to take more active roles in decision-making for their treatment pathways. Our present study will yield necessary data on important treatment attributes among patients with CLL, DLBCL, and FL. A large-scale evaluation of patient satisfaction and preferences can be used for education of the clinical and broader medical community in a landscape that includes several new therapies.