DOI: 10.6084/m9.figshare.21195806.v1
title: Agreement between patients and physicians on scores of inflammatory bowel disease activity and burden assessed on a telemonitoring platform

description: Telemonitoring is increasingly used in the management of IBD patients. We investigated the agreement between patients and physicians on scores of disease activity and burden. Consecutive outpatients at one IBD clinic were recruited between February and December 2021. Enrolled patients completed a questionnaire for disease activity (Harvey-Bradshaw Index [HBI] for Crohn’s disease or Simple Clinical Colitis Activity Index [SCCAI] for ulcerative colitis) and a test of disease burden (Pictorial Representation of Illness and Self Measure [PRISM]). They did the tests within 5 days of an outpatient visit, working independently on IBD Tool, a new web-based telemonitoring application. Concomitantly, the senior and junior physicians who examined them completed the same tests. The agreement was tested for every pair of scores. Five hundred and sixty patients (289 Crohn’s disease; 271 ulcerative colitis) completed disease questionnaires on IBD Tool (in total, 742 times). By Spearman’s correlation, the agreement was substantial both for HBI (rho 0.685–0.837) and SCCAI (rho 0.694–0.888) for comparisons between patients, junior and senior physicians. The agreement was moderate-to-substantial for PRISM (rho 0.406–0.725) for the same comparisons. The correlation between disease activity (HBI/SCCAI) and PRISM scores was substantial for senior (rho 0.757–0.788) or junior (rho 0.746–0.753) physicians and moderate for patients (rho 0.458–0.486). The median PRISM score difference was 2.3–1.6 points lower between patients and senior-junior physicians. Agreement between IBD patients and physicians was substantial for disease activity and moderate for disease impact. The inclusion of disease burden scoring in telemonitoring platforms provides important information for the management of IBD patients.Study highlightsWhat IS known•Continuous response to treatments and patient-reported outcomes became an essential goal for IBD patient management.•The use of tele-monitoring and eHealth technologies allows for regular disease assessments and for managing more efficiently IBD patients; disease questionnaires and tests are key to support eHealth tools.What is new here•Agreement between IBD patients and physicians was substantial for disease activity and moderate for disease burden, while agreement among junior and senior physicians was substantial for both.•PRISM performs as well for ulcerative colitis as for Crohn’s patients.•The inclusion of disease burden tests might add to eHealth platforms valuable information, complemental to disease activity questionnaires. What IS known •Continuous response to treatments and patient-reported outcomes became an essential goal for IBD patient management. •The use of tele-monitoring and eHealth technologies allows for regular disease assessments and for managing more efficiently IBD patients; disease questionnaires and tests are key to support eHealth tools. What is new here •Agreement between IBD patients and physicians was substantial for disease activity and moderate for disease burden, while agreement among junior and senior physicians was substantial for both. •PRISM performs as well for ulcerative colitis as for Crohn’s patients. •The inclusion of disease burden tests might add to eHealth platforms valuable information, complemental to disease activity questionnaires.