Department of Medicine and Gastroenterology, SE Trust, Belfast N. Ireland, UK.
Public Health Unit, Epimad Registry, Maison Régionale de la Recherche Clinique, Lille University Hospital, France INSERM UMR 995, LIRIC, Team 5: From epidemiology to functional analysis, Lille University, France.
Department of Gastroenterology, IBD Center, Istituto Clinico Humanitas, Humanitas University, Milan, Italy.
INSERM U954 and Department of Hepatogastroenterology, Nancy University Hospital, Lorraine University, Allée du Morvan, F-54511 Vandoeuvre-lès-Nancy, France.
Disability is a common worldwide health challenge and it has been increasing over the past 3 decades. The treatment paradigm has changed dramatically in inflammatory bowel diseases (IBDs) from control of symptoms towards full control of disease (clinical and endoscopic remission) with the goal of preventing organ damage and disability. These aims are broadly similar to rheumatoid arthritis and multiple sclerosis. Since the 1990s, our attention has focused on quality of life in IBD, which is a subjective measure. However, as an objective end-point in clinical trials and population studies, measures of disability in IBD have been proposed. Disability is defined as '…any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.' Recently, after 10 years of an international collaborative effort with the World Health Organization (WHO), a disability index was developed and validated. This index ideally would assist with the assessment of disease progression in IBD. In this review, we will provide the evidence to support the use of disability in IBD patients, including experience from rheumatoid arthritis and multiple sclerosis. New treatment strategies, and validation studies that have underpinned the interest and quantification of disability in IBD, will be discussed.