Who stop telemonitoring disease activity and who adhere: a prospective cohort study of patients with inflammatory arthritis

Abstract

Background The use of frequent electronic patient reported outcome measures (ePRO’s) enables monitoring disease activity at a distance (telemonitoring) in patients with inflammatory arthritis. However, telemonitoring studies report declining long-term adherence to reporting ePRO’s, which may oppose the benefits of telemonitoring. Therefore, the objective was to investigate what factors are associated with (non-)adherence to telemonitoring with a weekly ePRO in patients with inflammatory arthritis (IA). Methods We performed a prospective cohort study in patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) and ankylosing spondylitis (AS) at Reade Amsterdam, The Netherlands. Patients telemonitored their disease activity weekly for 6 months with a modified Multidimensional Health Assessment Questionnaire completed in a smartphone application. The primary outcome was time to dropout, defined as ≥ 4 weeks of consecutively nonresponse. Based on literature and through expert meetings, a predefined set of 13 baseline factors were selected to assess the association with time to dropout through a multivariable Cox-regression analysis. Results A total of 220 consecutive patients were included (mean age 54, SD 12; 55% females; 99 RA, 81 PsA, and 40 AS). A total of 141 patients (64%) dropped out, with a median time to dropout of 17 weeks (IQR 9–26). Women had a significant higher chance to dropout over 6 months compared to men (HR 1.58, 95% CI 1.06–2.36). Conclusion In the set of investigated factors, women stopped reporting the weekly ePRO sooner than men. Future focus group discussions will be performed to investigate the reasons for dropout, and in specific why women dropped out sooner. Trial registration This trials was prospectively registered at www.trialregister.nl (NL8414).

Facilitators and barriers to adhere to monitoring disease activity with ePROs: a focus group study in patients with inflammatory arthritis

“…All participants that participated in the Self-Monitoring of Rheumatoid Arthritis (SEMORA) trial (n = 49) or the Digital Cohort of Inflammatory Rheumatic Diseases (DICODE) study (n = 220), were invited by email to participate in the FGDs. The main results of both trials have been published elsewhere [16,17]. In short, both studies included patients over 18 years old, who were owner of a smartphone and able to read Dutch.…”

“…A limitation of this study was that selection bias may have occurred, which could influence the generalizability. Selection bias is often present in telemonitoring studies in rheumatology, and is also likely present in this study as the participants were a subset of previously performed telemonitoring studies, that both included a relatively high percentage of patients with tertiary education [5,16,17]. This is highlighted by the seven patients who did not want to participate after changing the FGD to online.…”

“…Recently, Seppen et al reported that 53% of the ePROs were filled in during a 12 months randomized controlled telemonitoring trial [16]. Wiegel et al [17] reported in a prospective cohort study that 31% of the participants stopped reporting ePROs after 10 weeks, and 64% after 26 weeks. This decline in adherence may reduce the potential benefits of telemonitoring disease activity.…”

“…So far, studies have shown that older patients and males may have higher odds to remain adherent to telemonitoring [14,17]. However, due to the quantitative nature of these studies, the underlying reasons of why these associations are present, remain unknown.…”

Predictors for response to electronic patient-reported outcomes in routine care in patients with rheumatoid arthritis: a retrospective cohort study

“…Despite these promising results in clinical trials, ePROs have not yet found broad application in routine clinical practice, mainly due to a low completion rate by patients [ 6 ]. Recent trials showed a decreasing completion of ePROs over time, down to 40% after six months [ 3 , 7 , 8 ]. To date, only a little evidence is available on which patient factors are associated with a lower or higher ePRO response rate.…”