Altruism among participants in cancer clinical trials

Abstract

Background Patients’ motivations for participation in cancer clinical trials are incompletely understood. Even less is known about the factors that influence participants’ motivations for enrolling in trials. Purpose We studied the reasons why adult patients and parents of pediatric patients agree to participate in cancer trials. We focused on the role of altruism across all phases of trial. Methods We surveyed adult patients and parents of pediatric patients participating in phase I, II, or III cancer clinical trials. We asked respondents why they agreed to enroll, and examined correlates of altruistic motivation using univariate and multivariate analyses. Results Among 205 adults and 48 parents of children participating in cancer trials, 47% reported that altruistic motivations were ‘very important’ to their decisions to enroll. In multivariate analysis with phase III trial participants as the reference group, phase I trial participants least often identified altruism as a ‘very important’ motivation for enrolling (phase I OR 0.4, 95% CI (confidence interval) 0.2–0.8; phase II OR 0.9, 95% CI 0.5–1.5, overall P = 0.017). Thirty-three respondents (13%) reported being motivated primarily by altruism. In multivariate analysis, participants with poor prognoses—defined as an expected 5-year disease-free survival of ≤10%—reported altruism as their primary motivation less often than those with better prognoses (OR 0.2, 95% CI 0.1–0.5, P = 0.001). Altruistic motivations did not differ between adult patients and parents of pediatric participants. Limitations The data are derived from related academic medical centers in one city, and the study sample reflects limited sociodemographic diversity, thereby limiting generalizability to other settings. Conclusions Although cancer trial participants commonly report that altruism contributed to their decision to enroll, it is rarely their primary motivation for study participation. Participants in early phase trials and those with poor prognoses are least often motivated by altruism.