Oxford University Press, Journal of Crohn's and Colitis, Supplement_1(15), p. S472-S473, 2021
DOI: 10.1093/ecco-jcc/jjab076.607
Full text: Download
Abstract Background Given the high impact on health-related quality of life (HRQoL), IBD patients may benefit from continued monitoring by specialized caregivers. Patient-reported outcomes (PRO) can be collected through telemedicine in a reliable way, allowing to monitor patients even in between hospital visits and supporting patient-physician interaction. The aim of this study was to implement an electronic questionnaire into routine clinical practice and to explore its added value. Methods Since May 2020, all IBD patients visiting the infusion unit of our tertiary referral centre (+/- 130 patients/week) receive an electronic questionnaire one week prior to their visit. Questions about disease activity are included through the two-component PRO (PRO2), and about HRQoL in form of the IBD Disk, which visually shows the impact of disease on ten different health domains over time (lower scores seen in quiescent disease). Based on PRO2 scores, clinical remission was defined as a liquid stool frequency ≤1 and an abdominal pain score ≤1 in patients with Crohn’s disease (CD), and as a stool frequency score ≤1 and no rectal bleeding in patients with ulcerative colitis (UC). We evaluated PROs and participation rate, and the System Usability Scale (SUS) was used to evaluate usability of the new system. Results In Jan-Feb 2021, a total of 447 unique IBD patients completed the full questionnaire at least once [48.0% participation rate, 62.9% CD, 53.0% male, median age (IQR) 46.5 (33.8–56.8) years, 94,9% on biologic therapy, 61.5% in clinical remission, Figure 1]. No association was found between sex, age (group) or IBD type and adherence to the questionnaire. Median (IQR) IBD Disk scores were significantly lower for remitters versus non-remitters [11 (3–25) vs. 40 (21–59), p<0.001]. The most affected health dimension in all patients regardless of remission state was energy with differences for remitters [median (IQR) 2 (0–5)] and non-remitters [median (IQR) 6 (3–8)]. Whereas all ten health dimensions of the IBD Disk were highly correlated with disease activity (p<0.001, Figure 2), no correlation was found with disease type, sex, age (group) or type of biologic therapy. In Feb 2021, 375 patients of the same cohort were randomly invited to complete the SUS. A median (IQR) SUS score of 85 (71.25–91.25) was found, indicating excellent usability of the new system (n=113). Conclusion The results show high correlation between disease activity and the impact on HRQoL, especially energy levels. Based on these PROs a more individualized approach at the infusion unit could be installed. This system is currently also implemented for IBD patients who do not visit the infusion unit but receive oral or subcutaneous therapy or no maintenance therapy.