Development of a technology-enhanced patient-reported outcome evaluation system for inflammatory bowel disease: A multidimensional approach to assessing survival quality

Abstract

Background

Inflammatory Bowel Disease (IBD) significantly affects patients’ long-term health and survival quality. Accurate and technology-driven assessment tools are essential for monitoring disease impact and optimizing individualized treatment strategies.

Objective

To develop a standardized and technology-enhanced evaluation system for IBD based on patient-reported outcomes (IBDPRO), enabling a comprehensive and dynamic assessment of patients’ survival quality.

Methods

A multidimensional evaluation system was constructed using the three-dimensional quality structure model. The framework incorporated expert consensus through the Delphi method, semi-structured interviews, and analytic hierarchy process (AHP) for weight assignment. A digital platform based on the REDCap system was used for data collection and patient follow-up. Statistical correlations were analyzed between survival quality scores and disease activity indices (PMS and HBI), as well as subjective self-assessments.

Results

High expert authority coefficients (0.926, 0.931) and significant agreement levels (Kendall's W = 0.226, 0.239, P < 0.01) were achieved. survival quality was strongly negatively correlated with disease activity (Spearman's r = -0.76, P < 0.001) and positively correlated with patients’ self-perceived condition changes (r = 0.79, P < 0.001). The system demonstrated reliability, validity, and responsiveness across multiple dimensions.

Conclusions

The IBDPRO system provides a scientifically rigorous and technologically integrated method for evaluating the survival quality in IBD patients. This approach facilitates data-driven clinical decision-making and supports a transition toward personalized, patient-centered healthcare.