Patient-Reported Experiences with Treatment of Chronic Lymphocytic Leukemia (CLL) and Mantle Cell Lymphoma (MCL): Results of a Quantitative Survey
Authors: Schenkel Brad , Naim Ahmad B. , Roland Barbara , Wyant Susan 
Published: October 2019

Abstract
Introduction
Historically, the predominant treatments for CLL and MCL have included intravenously (IV) administered chemotherapeutic regimens. However, there has been a rapid growth recently in new CLL/MCL treatment options, including orally administered products. Moreover, the therapeutic profiles of these newer agents are generally improving, particularly for patients with relapsed or refractory disease. There is currently a paucity of research evaluating patients’ experiences with current and emerging treatments for both CLL and MCL. The objective of this study was to explore patients’ experiences with, and preferences for, CLL/MCL therapies.
Methods
Data were collected from 27 May to 30 June 2014 via a self-administered, online, quantitative survey that was developed based on qualitative interviews with CLL and MCL patients. Patients with CLL or MCL were recruited from a market research panel or were referred by a physician or other patients. Patients were eligible for the survey if they had been diagnosed with CLL or MCL by a physician, had been treated for ≥ 2 weeks in the past 12 months, and were not a clinical trial participant. Quantitative data were collected regarding treatment history, factors influencing treatment selection, opinions of treatment, experiences with IV treatment, and patient-reported health and wellness.
Results
A total of 75 patients (52 with CLL, 23 with MCL) completed the survey. CLL and MCL patients provided similar responses to most questions. The majority of patients were white (72%), < 65 years of age (92%), and privately insured (81%); 51% were female. The mean EQ-5D self-reported score for health state (0 = worst imaginable to 100 = best imaginable) was 61. Almost half of both CLL and MCL patients had received one (44%) or two (40%) lines of treatment. A much smaller proportion of patients had received three or more lines of treatment (3rd line=4%, 4th line=8%, and 5th line or more=4%). For the following questions, patients were asked to check all reasons that applied to them. The most common reasons for changing/stopping past CLL/MCL treatments were: too many side effects (38%), medication did not work to treat the disease (36%), symptoms were not relieved (33%), and work productivity declined because of side effects (26%). When asked about reasons for dissatisfaction with CLL/MCL treatments, the most commonly reported reasons were safety concerns (33%) and side effects (32%); 37% said none applied. Common reasons for satisfaction with CLL/MCL treatment were: medication is covered by my insurance (49%), convenient dosing schedule (39%), easy to use (33%), works most of the time (32%), works all of the time (31%), works better than other drugs I have tried (28%), and is affordable (28%). 65% of patients visited their doctor together with a spouse, family member, friend, or paid helper. Frequency of IV treatment was every 1-2 weeks for 67% of patients and required an average of 3 hours for infusion and 4 hours overall, including travel and waiting time. Mean satisfaction with treatment (1 = extremely dissatisfied to 7 = extremely satisfied) was 5.3. Longer duration of effect was the most important treatment feature for CLL/MCL patients.
Conclusions
The results of this survey show that the greatest source of patients’ dissatisfaction with their current or most recent treatment for CLL/MCL was the treatment’s safety and tolerability. Many patients receive IV treatment for CLL/MCL every 1-2 weeks, and each IV treatment requires several hours of time not only for the patient, but in nearly two-thirds of cases, also for a family member or friend who accompanies the patient. These survey results suggest that substantial unmet needs remain for the care of patients with CLL and MCL.

Disclosures
Schenkel: Janssen Scientific Affairs, LLC: Employment, Stock ownership Other. Naim:Janssen Scientific Affairs, LLC: Employee of Janssen Scientific Affairs, LLC at the time of the study Other. Roland:Janssen Scientific Affairs, LLC: Consultancy. Wyant:Janssen Scientific Affairs, LLC: Consultancy.