Patient perceptions of the risks and benefits of infliximab for the treatment of inflammatory bowel disease

Background: For a patient to make informed, preference based decisions, they must be able to balance the risks and benefits of treatment. The aim of this study was to determine patients' and parents' perceptions of the risks and benefits of infliximab for the treatment of inflammatory bowel disease (IBD). Methods: Adult patients with IBD and parents of patients attending IBD patient education symposiums were asked to complete a questionnaire regarding the risks and benefits of infliximab. Results: One hundred and sixty-five questionnaires were completed. A majority (59%) of respondents expected a remission rate greater than 50% at 1 year and 18% expected a remission rate greater than 70% at 1 year. More than one-third (37%) of respondents answered that infliximab is not associated with a risk of lymphoma and 67% responded that the lymphoma risk is no higher than twice that of the general population. When presented a scenario of a hypothetical new drug for IBD with risks mirroring those estimated for infliximab, 64% of respondents indicated that they would not take the medication, despite its described benefits. Thirty percent of these patients were either currently taking or had previously taken infliximab. Patients actively taking infliximab predicted the highest remission rates for the infliximab (P = 0.05), and parents of patients predicted the lowest (P = 0.01). Parents estimated a higher risk of lymphoma than patients (P = 0.003). Risk and benefit perception was independent of gender and age of patient respondents. Conclusions: Compared to published literature, patients and parents of patients overestimate the benefit of infliximab and underestimate its risks. We conclude that effective methods for communicating risks and benefits to patients need to be developed.