Willingness to Participate in Longitudinal Research Among People with Chronic Pain Who Take Medical Cannabis: A Cross-Sectional Survey

Background: Regulatory barriers limit clinical trials of medical cannabis in the United States. Longitudinal cohort studies may be one feasible alternative that could yield clinically relevant information. Willingness to participate in such studies is not known. Materials and Methods: In October 2016, we surveyed a convenience sample of patients with chronic pain from two New York registered organizations (responsible for growing, processing, distributing, and retailing medical cannabis products). After a vignette describing a longitudinal cohort study involving weekly patient-reported outcomes and quarterly assessments of physical functioning and urine and blood tests, we asked about respondents' willingness to participate. We examined willingness to participate, duration of participation, and frequency of data collections overall and by subgroups, using multivariable logistic regression models. Results: Of 405 respondents (estimated response rate: 30%), 54% were women and 81% were white non-Hispanic. Neuropathy was the most common pain condition (67%) followed by inflammatory bowel disease (19%). Of respondents, 94% (95% CI 92-97%) thought that the study should be done, 85% (95% CI 81-88%) would definitely or probably enroll if asked, 76% (95% CI 72-81%) would participate for >= 1 year, and 59% (95% CI 54-64%) would respond to questions at least daily. Older age was the only factor associated with lower willingness to participate, lower willingness to participate for >= 1 year, and lower willingness to respond to questions at least daily. Conclusions: Nearly all respondents were supportive of the proposed study and most reported that they would enroll if asked. Enhanced engagement with older individuals may be needed to promote equal enrollment. Recruitment for longitudinal cohort studies with frequent data collection appears feasible in this patient population.