Rheumatic disease patients'preferences in adverse drug reaction information regarding biologics

Background: Patient-reported outcomes (PROs) are increasingly used in studies and medical practice to obtain information on patients’ perspectives towards their treatment or disease. However, study outcomes are primarily directed at and shared with healthcare professionals, even though the results may also be relevant for patients.Objectives: The objective of this study was to obtain insight in which results patients with immune-mediated inflammatory diseases (IMIDs), including inflammatory rheumatic disease patients, prefer to receive after participating in the Dutch Biologic Monitor.Methods: The Dutch Biologic Monitor is a PRO-based prospective cohort event monitoring study focused on adverse drug reactions (ADRs) [1]. A survey was conducted among the participants of the Dutch Biologic Monitor who wanted to be informed about the results. Patients’ preferences were identified using twelve statements and rated with five-point Likert-type scales. Averages described the preference per statement. Preference for the results per IMID or altogether was assessed using Mann-Whitney U Test.Results: Respondents (N=591, response rate 67.6%) preferred results per IMID over aggregated results (p=<0.001). Information on whether patients with the same IMID experience ADRs (average 4.5), which biologics are most likely to cause ADRs (4.4) and whether the ADRs subside or disappear (4.4) were regarded as most interesting. Outcomes of patients with other IMIDs (3.5), patient characteristics (3.7) and injection site reactions (3.8) were least interesting