Inflammatory Bowel Disease Patients' Preferences for Subcutaneous versus Intravenous Therapies: A Mixed-Methods Study.

BACKGROUND: Multiple biologics are available to treat inflammatory bowel disease (IBD), which can either be administered subcutaneously or intravenously. The factors that determine patients' preferences for SC/IV administration in IBD are largely unknown. This study aims to elucidate how IBD patients trade off between medications' route of administration and other medication characteristics and to understand what drives patients' preferences. METHODS: We employed a mixed methods design using data from a prior quantitative conjoint analysis survey and a series of 22 qualitative interviews. We quantitatively assessed individual patients' preferences for subcutaneous (SC) or intravenous (IV) medications based on the part-worth utilities derived from the conjoint analysis and identified predictors for these preferences. We used a qualitative analysis to identify key themes surrounding patients' preferences in the interview data. RESULTS: Of 1,077 survey participants, 49% preferred an SC medication every 2 weeks, whereas 51% preferred an IV medication every 8 weeks. More people preferred SC at reduced administration frequencies, whereas less people preferred SC at the expense of lower efficacy or higher side-effects rates. Prior experience with SC/IV was the strongest predictor for patients' preferences. Qualitatively, we obtained in-depth insights in the perceived advantages and disadvantages of SC and IV medications and in patients' preconceived ideas. CONCLUSION: While prior SC/IV exposure was a strong predictor for SC/IV preferences, patients' preferences largely are determined by a variety of other personal factors. The themes we identified could help guide clinicians when discussing therapeutic options with their patients and support shared decision-making.

The Reliability of Patient Self-reported Utilization in an Inflammatory Bowel Diseases Learning Health System.

Background: Inflammatory bowel disease (IBD) care is beset with substantial practice variation. Learning health systems (LHSs) aim to learn from this variation and improve quality of care by sharing feedback and improvement strategies within the LHS. Obtaining accurate information on outcomes and quality of care is a priority for LHS, which often includes patients' self-reported data. While prior work has shown that patients can accurately report their diagnosis and surgical history, little is known about their ability to self-report recent healthcare utilization, medication use, and vaccination status. Methods: We compared patient self-reported data within the IBD Qorus LHS regarding recent IBD-related emergency department (ED) visits, hospitalizations, computerized tomography (CT) scans, corticosteroid use, opioid use, influenza vaccinations, and pneumococcal vaccinations with electronic health record (EHR) data. Results: We compared 328 patient self-reports to data extracted from the EHR. Sensitivity was moderate-to-high for ED visits, hospitalizations, and CT scans (76%, 87%, and 87%, respectively), sensitivity was lower for medication use with 71% sensitivity for corticosteroid use and only 50% sensitivity for self-reported use of opioids. Vaccinations were reported with high sensitivity, but overall agreement was low as many patients reported vaccinations that were not registered in the EHR. Conclusions: Self-reported IBD-related ED visits, hospitalizations, and CT scans are reported with high sensitivity and accuracy. Medication use, and in particular opioid use, is less reliably reported. Vaccination self-report is likely more accurate than EHR data as many vaccinations are not accurately registered.

Assessing Patient Decision-Making on Biologic and Small-Molecule Therapies in Inflammatory Bowel Diseases: Insights From a Conjoint Analysis in the United States, Canada, and the United Kingdom.

BACKGROUND: Recent drug approvals have increased the number of therapies available for inflammatory bowel disease (IBD), making it difficult for patients to navigate available treatment options. We examined patient decision-making surrounding biologic and small-molecule therapies in an international cohort of patients from the United States, Canada, and the United Kingdom using conjoint analysis (CA), a form of tradeoff analysis examining how respondents make complex decisions. METHODS: We performed a CA survey that quantified the relative importance of therapy attributes (eg, efficacy, adverse effects) in decision-making. Patients with IBD were recruited from the general population and through specialty IBD clinics. We used a hierarchical Bayes analysis to model individual patients' preferences and compared the relative importance of medication attributes between countries and practice settings. Using a series of multivariable linear regression models, we assessed whether demographic and clinical characteristics (eg, IBD subtype, severity) predicted how patients made decisions. RESULTS: Overall, 1077 patients in 3 countries completed the survey. No differences in the relative importance of medication attributes were observed between the 3 countries' general IBD populations. However, efficacy was more important for patients in the US-based IBD specialty care cohort than for the general IBD population (29% and 23% importance, respectively; P < 0.0001). A few demographic and clinical characteristics were associated with small changes in individual preferences. CONCLUSIONS: In this large international CA study, patients prioritized efficacy as the most important therapeutic attribute. Decision-making seemed to be highly personalized in that therapeutic preferences were hard to predict based on patient characteristics.