Patient engagement in long-term proms collection: 48-month observation in real-world clinical practice

Abstract Background/Aims Patient-reported outcome measures (PROMs) allow effective communication of disease experiences and encourage shared decision-making for people with inflammatory arthritis (IA). This analysis examines the long-term utilization of PROMs collection in a real-world clinical environment. Methods Clinical practice review at North Bristol NHS Trust rheumatology clinic (July 2018 - July 2022), focussing on PROMs collection (joint assessment (self-JA), HAQ, RAPID3) from patients with IA, using a smartphone-based diary (Living With) to assess and record disease activity. The app is GDPR and NHS Data Security and Protection Toolkit (ODS Code 8JP33) compliant. Ethical approval wasn’t required for this service review. Data were fully anonymized prior to analysis. Statistical analysis was completed in RStudio (V.1.4.1717). Kaplan-Maier analysis estimated app engagement. “Long-term” users were defined as those completing ≥1 PROM over 12 weeks before data cutoff. Participants recruited ≤16 weeks before data cutoff were excluded. Results Over 48 months, 1257 patients were invited and 967 (76.9%) downloaded the app.711 (56.6%) completed a PROM at least once. 79 (11.1%) were excluded due to diagnosis change out of IA group. Among 632 IA patients: 69.1% were female, mean age was 53.7±13.9 years. 63.7% had rheumatoid arthritis, 25.2% psoriatic arthritis; 7.4% undifferentiated IA, 2.1% enteropathic, 1.6% reactive arthritis, respectively. Recruitment increased over time with a noticeable rise in April 2020. The median number of completed RAPID3 was 9 [4; 30], self-JA - 9 [3; 26] and HAQ - 4 [1; 10]. 71.8% of recruited patients completed all PROMs; 15.8% - two PROMs and 12.3% - at least once. Median time in days from registration to first completed RAPID3 was 1 [0; 15], self-JA - 2 [0; 23] and for HAQ - 3 [0; 30]. Table 1 shows the proportion of “long-term” app users. The median duration of engagement was: RAPID3- 64.1 95%CI [36.9; 55.0], self-JA -57.9[52.7; 65.1], HAQ - 44.3 [36.9; 55.0] weeks. Conclusion Engagement in PROMs collection has markedly increased since 2020 but does decrease over time. Ongoing encouragement from health professionals to use and integrate PROMs into care pathways is essential and provides valuable information on the effectiveness and tolerability of health interventions. Disclosure I. Biliavska: None. E. Lenguerrand: None. E. Sparey: None. J.H. Tobias: None. P.D.H. Hamann: Consultancies; provided consultancy for Living With Ltd Software Company for the development of the smartphone application -Living With Rheumatoid Arthritis. Royalties; limited royalty agreement with Living With Ltd Software Company. Honoraria; from Gilead Pharmaceuticals for the production of training materials on remote monitoring for patients with arthritis.