Willingness of patients with SUD to participate in research: prevalence and associated factors.

Abstract

Greater attention is focusing on the motivations of subjects recruited for research protocols, especially in vulnerable populations. Although addiction is a highly stigmatized condition, very little research has focused on the factors influencing the decision to participate of patients with an addiction. Our aim is to gather further evidence in relation to the motivations of people with Substance Use Disorders (SUD), comparing their reasoning and willingness to participate in a hypothetical research study of 53 subjects with DSM-5 diagnoses of SUD and 50 controls. Responses on the MacArthur Competence Assessment Tool for Clinical Research were documented and correlated with several variables. There were no significant differences in willingness to participate in research and reasons for doing so between SUD and controls. Among SUD subjects, 59% mentioned altruism, 53.8% expected therapeutic benefits, and 43.6% desired to help others; none mentioned money. Of those patients with SUD who refused to participate in research, 69.2% cited aversion and 46.2% mentioned risk. Willingness to participate was correlated with higher computer literacy and better cognitive performance. In the multivariate analysis, aversion was a significant predictor of willingness to participate in research. When research is not related to their diagnosis, the motivations of SUD and controls are similar and flowed logically from the study. However, elements associated with therapeutic misconceptions were also evident. Therefore, negative views about the motivations of SUD subjects' participation in research are unfounded. Consequently, to improve study recruitment, assessments may be targeted to specific vulnerabilities rather than to diagnoses.