Background: There is limited disability data in the biologic era using Patient Reported Outcomes. The aims of this study were to describe the disability status and identify determinants of disability in a well characterized cohort of IBD patients using the Inflammatory Bowel Disease Disability Index (IBD-DI).
Methods: From June 2015 to September 2016, the IBD-DI was administered to adult IBD patients. Natural history data were available for each patient from time of diagnosis to time of completing the questionnaires. Clinical remission status at time of answering the questionnaire was also recorded.
Results: 250 patients with IBD completed the IBD-DI. The median duration from diagnosis to completion of questionnaire was 45 months. The median age at diagnosis was 30 years.
The median IBD-DI was 31.3 (IQR 17.9–41.1). The median IBD-DI score for CD was 32.14 (IQR 19.2–45.1) in CD and 28.71 (IQR 17.4–44.5) in UC. CD females were more disabled than males (IBD-DI score 36.6 vs 27.1, p=0.001). There was no significant gender bias in the UC group (female IBD-DI score 32.6 vs male 30.6, p=NS).
Patients with active disease at the time of answering the questionnaires had a higher IBD-DI score compared with patients in remission (42.4 vs 29.0, p<0.001). Disease phenotype or disease location did not influence the IBD-DI score in CD or UC. Female CD patients in remission were also more disabled compared with male CD patients (33.9 vs 23.9, p=0.002). There was no difference in disability scores by gender in the UC group adjusted for clinical activity. UC patients on biologic therapy were more disabled than those who were not, despite being in clinical remission (IBD-DI score 36.7 vs 25.9, p=0.03).
CD patients who had undergone intestinal resection demonstrated a trend towards reduced disability compared to those who had not (IBD-DI score 30.5 vs 35.3, p=0.059). CD patients with perianal disease were not more disabled than those without, (IBD-DI score 34.0 vs 32.0, p=0.3).
52 patients were severely disabled (IBD-DI score >50). 62% had CD, 71% were female, and 46% were in clinical remission at the time of answering the questionnaires. Of the CD patients, 70% had an inflammatory phenotype, 15% had perianal disease, and only 31% had prior intestinal resection. Only 10% of the UC patients with severe disability had undergone colectomy for refractory disease.
Factors associated with high disability scores on multivariate analysis were female gender (p=0.01) and active disease (p=0.001) in CD, and need for biologic therapy (p=0.027) and active disease (p=0.005) in UC.
Conclusions: Female CD patients are more disabled than males. The need for biologic therapy in UC is associated with higher disability. Severe disability is present in the absence of clinical activity.