Are asthma patients willing to participate in an interactive web-based disease registry?

Abstract

Rationale: RAPSODI is a newly developed Dutch severe asthma registry, aimed at improving quality of care by systematically collecting and evaluating clinical data, effectiveness of novel treatments, side effects and costs. We wondered whether patients would be willing to participate in the registry by periodically completing questionnaires through a web-based interactive platform, and whether this would be feasible, and sustainable.

Methods: 24 adult patients (12 severe asthma, 12 mild-moderate asthma) were consecutively recruited from an outpatient asthma clinic and asked to complete 4 asthma-related questionnaires through a web-based platform. Beforehand and afterwards they were asked about their willingness to participate in the registry, the (expected) time to complete the questionnaires, and how often they would be prepared to enter data.

Results: 91.7% of patients were willing to participate. Willingness was similar between patients with severe and mild-moderate asthma. Time for completion of the RAPSODI questionnaires was shorter than patients expected beforehand (20 min vs 12.5 min respectively; p<0.01). Severe asthma patients were willing to complete the questionnaires more frequent than mild-moderate asthmatics (4 times/yr vs 2 times/yr; p=0.045), and even more frequent (up to 12 times/yr) after actual completion of the questionnaires.

Conclusion: Patients with asthma are willing to participate in an interactive disease specific registry, and those with severe asthma are prepared to spend more time on the registry compared to patients with mild asthma. This shows that regular data entry by patients with severe asthma through a web-based platform is sustainable and feasible.