The burden of inflammatory bowel disease from an individual and a societal perspective

Inflammatory bowel disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), are chronic inflammatory disorders of the gastrointestinal tract. The early onset, fluctuating disease course and requirement of lifelong (medical) treatment place a substantial burden on patients’ lives. Several patient-reported outcome measures (PROMs) have been developed to address the personal burden related to IBD. Additionally, the increasing prevalence of IBD, reduced workforce participation and the treatment with expensive biologicals has a substantial impact on the healthcare system and society. The general aim of this thesis was to provide a comprehensive picture of the burden related to IBD, both from an individual and a societal perspective. In summary, we found that one-third of IBD patients is non-adherent to anti-TNF agents and that non-adherence is associated with adalimumab use, illness perceptions, and loss of response. Additionally, we observed that QoL and disability are mainly determined by clinical disease activity and illness perceptions. Crohn’s disease (CD) patients reported more disability as compared with ulcerative colitis (UC) patients, particularly, with regard to regulating defecation, participation in the community, personal relationships, and work. Lastly, greater disability is associated with increased healthcare costs.