Objective: We sought to identify (a) what types of information US adults with rheumatic and musculoskeletal diseases (RMD) perceive as most important to know about their disease, and (b) what functions they would use in an RMD-specific smartphone app.
Methods: Nominal groups with RMD patients were conducted via online tools to generate a list of needed education topics. Based on nominal group results, a survey with final educational items was administered online, along with questions about desired functions of a smartphone app for RMD and wearable use, to patients within a large community rheumatology practice-based research network and the PatientSpot registry. Chi-square tests and multivariate regression models were used to determine differences in priorities between groups of respondents with inflammatory conditions (IC) and osteoarthritis (OA), and possible associations.
Results: At least 80% of respondents considered finding a rheumatologist, understanding tests and medications, and quickly recognizing and communicating symptoms to doctors as extremely important education topics. The highest-ranked topic for both IC and OA groups was "knowing when the medication is not working." The app functions that most respondents considered useful were to: view lab results, record symptoms to share with their rheumatology provider, and record symptoms (e.g. pain, fatigue) or disease flares for health tracking over time. Approximately one-third of respondents owned and regularly used a wearable activity tracker.
Conclusion: People with RMD prioritized information about labs, medications, and disease/symptom monitoring, which can be used to create educational and digital tools that support patients during their disease journey.