Agreement between patients and physicians on scores of inflammatory bowel disease activity and burden assessed on a telemonitoring platform

Abstract

Background and aims

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.

Methods

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.

Results

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.

Conclusion

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 highlights

• 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.

Keywords:

• Telemonitoring
• inflammatory bowel disease (IBD)
• agreement
• Harvey-Bradshaw Index (HBI)
• Simple Clinical Colitis Activity Index (SCCAI)
• Pictorial Representation of Illness and Self Measure (PRISM)

Acknowledgements

Valerie Matarese provided scientific editing.

Ethical approval

The study was approved by Comitato Etico Interaziendale A.O.U. Città della Salute e della Scienza di Torino—A.O. Ordine Mauriziano—A.S.L. Città di Torino (ref. 356.413, 21 January 2021).

Patient consent

The study was presented to each patient during an outpatient visit by the senior gastroenterologist. The patients were asked to give online consent to study participation and to set their personal passwords before starting the study.

Author contributions

G.P., R.R., and M.D.: study design. M.M., E.G., V.F., G.P., and M.D.: development of software, selection of tests, testing the software. M.M., E.G., A.C., E.C., A.L., M.M., E.M., M.C., and M.D.: data collection. M.M., E.G., A.C., E.C., A.L., M.M., E.M., M.C., R.R., and M.D.: data analysis and writing the first draft of the paper. All authors: critical evaluation of the paper and final approval.

Disclosure statement

M.D.: advisory board and lectures: Janssen, Pfizer, Takeda, Cellgene, SOFAR, Ferring, Chiesi, Abbvie, Roche. Consultancy: Quintiles. Clinical trials: Roche, GILEAD, Janssen, Takeda, Eli Lilly. Other authors: nothing to disclose.

Data availability statement

Deidentified individual participant data that underlie the reported results will be made available after the publication date depending on reasonable request, to be sent to [email protected].

Additional information

Funding

This work was supported by the Fondazione IBD Onlus, Turin, Italy under Grant eHealth grant.