Abstract
BACKGROUND: The aim of the observational, prospective study was to validate a novel, nonverbal assessment tool for perceived disease burden-Pictorial Representation of Illness and Self-Measure (PRISM)-in ulcerative colitis (UC) against established patient health questionnaires. The cumulative burden of patients recently diagnosed (<3 years) with UC was also evaluated. METHODS: "ICONIC" - Understanding the impact of ulcerative colitis and its associated disease burden on patients - was a noninterventional, multicountry, multicenter study performed in a 2-year follow-up format in adult patients with recently diagnosed UC in 33 countries, regardless of disease severity or treatment. Data collection consisted of five visits, scheduled at approximately 6-month intervals. For the current analysis, patient data from Saudi Arabia and Kuwait were evaluated. The collected data comprised demographics, disease-related data, UC treatment, and healthcare resources, as well as physician- and patient-assessed quality-of-life and disease burden questionnaires. Correlations between selected questionnaire scores were performed using Spearman's rho. RESULTS: Disease severity at baseline and throughout the study was slightly less favorable in this country analysis compared with the global study cohort. Disease burden was assessed by PRISM and improved within 24 months. CONCLUSIONS: The detected moderate correlation between PRISM and other assessment methods supports the validity of PRISM. Differences in perceptions of UC-related burden between physician and patient may reflect to some degree insufficient patient-physician communication.