Patient Perceptions of the Risks and Benefits of Infliximab for the Treatment of Inflammatory Bowel Disease

Abstract

Purpose: The purpose of this study was to determine patients' perceptions of the risks and benefits of infliximab for the treatment of inflammatory bowel disease (IBD). Methods: Adult patients and parents of patients attending IBD patient education symposiums were asked to complete a survey regarding risks and benefits of infliximab. All surveys were collected before outcomes of infliximab therapy were discussed. Results are reported as simple descriptive statistics and bivariate analyses were performed to test for associations using Kruskal or Kendall tests. Results: 165 surveys were completed. 53% of respondents were adult patients (median age = 46), and 47% were parents of patients (children median age = 16). The majority of patients (67%) had Crohn's disease. 33% were either currently taking or had taken infliximab in the past. 59% of respondents expected a remission rate greater than 50% at one year and 18% expected a remission rate greater than 70% at one year. 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. 43% of patients responded that there is no increased risk of death due to a side-effect attributable to infliximab, and 83% responded that the risk of death is no higher than twice that of the general population. When given 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. 30% of these patients were either currently taking or had previously taken infliximab. Patients actively taking infliximab predicted the highest remission rates (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: A majority of patients and parents of patients overestimated the benefit of infliximab and greater than one-third answered that there is no increased risk of lymphoma or death. Patients were more optimistic about risks and benefits than parents, with patients actively taking infliximab predicting the highest remission rates. We conclude that effective methods for communicating risks and benefits to patients need to be developed to ensure proper informed consent.