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Achleitner, Ulrike (2012): Identification of areas of functioning and disability addressed in Inflammatory bowel disease-specific patient reported outcome measures. Dissertation, LMU München: Faculty of Medicine



Inflammatory Bowel Disease (IBD) is a chronic disabling disease of the gastrointestinal tract. The disease is strongly associated with limited performance of everyday activities and restrictions in work and employment, recreation and relationships to others, as well as reduced quality of life. Thus, suffering from IBD includes not only impairments of body functions and body structures but also limitations of activities in everyday life and restrictions in participation. Consequentially, a comprehensive approach of functioning and disability is required when addressing the impact of IBD. There are a large number of outcome measures that assess health status problems of persons with IBD. Many of these measures used in clinical practice or research are classification or scoring systems that refer to disease activity and symptomatology in IBD in terms of impaired body functions and structures (e.g., Crohn's Disease Activity Index (CDAI), Harvey Bradshaw Index). Hence, disability and functioning from a comprehensive point of view are poorly addressed in these measures and do not cover the whole spectrum of problems persons with IBD have to deal with. Patient-reported outcome measures (PROMs) offer the possibility to assess health status problems from the perspective of persons suffering a disease. The number of IBD-specific PROMs which focus on aspects of functioning, disability and health (e.g., Inflammatory Bowel Disease Questionnaire (IBDQ-32), Rating Form of IBD Patient Concerns (RFIPC), Inflammatory Bowel Disease Stress Index (IBDSI)) has increased over the last years so that the selection of appropriate PROMs for specific purposes or subpopulations has become a challenge for clinicians and researchers. However, up to now it remains unclear whether currently used IBD-specific PROMs cover the whole spectrum of functioning and disability. This doctoral thesis examines the content of IBD-specific PROMs using the International Classification of Functioning, Disability and Health (ICF) as a reference to facilitate the selection of appropriate PROMs by clinicians and researchers. The ICF endorsed by the World Health Organization as a common language of functioning and disability is a proven and useful tool for the examination and comparison of the content of outcome measures. A systematic literature review was performed to identify IBD-specific PROMs used in studies involving persons with IBD. Searches were performed in the literature databases Medline®, EMBASE, PsycINFO, CINAHL and CENTRAL. Searches were limited to English articles published between 1999 and 2009. Eligibility checks of abstracts and full-texts were performed applying pre-defined inclusion and exclusion criteria. IBD-specific PROMs reported in the selected studies, as well as study-related characteristics, were extracted. The items of the identified PROMs were translated (“linked”) to the most specific ICF category according to standardized and established linking rules. The linked ICF categories provided the basis of the descriptive analysis and the comparison of the content of the different PROMs presented in this thesis. A total of 9,728 papers were identified by the searches in the five electronic databases. The randomly selected abstracts of 2,579 papers were checked on inclusion and exclusion criteria according to the defined eligibility criteria. Based on this abstract check, 221 studies were identified for further analysis. Screening these 221 full-text articles, 46 studies were finally selected that reported the use of IBD-specific PROMs. The following eight IBD-specific PROMs were identified: Cleveland Global Quality of Life (Faszio Score) (CGQL), Inflammatory Bowel Disease Quality of Life Questionnaire (IBDQOL), IBDQ-32, IBDSI, Inflammatory Bowel Disease Questionnaire – short form (IBDQ-9), RFIPC, Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and Work Productivity and Activity Impairment: Crohn’s Disease (WPAI:CD). In total, these eight IBD-specific PROMs included 129 items which were linked to ICF categories. The most frequently identified ICF categories are 'b1300 Energy level' and 'b5254 Flatulence' (IBDQOL, IBDQ-32, IBDQ-9, RFIPC and SIBDQ), as well as 'd920 Recreation and leisure' (IBDQOL, IBDQ-32, IBDSI, IBS-QOL and SIBDQ). Most of the analyzed questionnaires do not cover a wide range of aspects needed to assess functioning and disability from a comprehensive perspective; they only focus on selected aspects of functioning and disability of persons with IBD (e.g., emotional functions, pain, intimate relationships and remunerative employment). This doctoral thesis provides an item-based examination of the content of IBD- specific PROMs using the ICF as a reference. It offers a clear and precise picture of the addressed PROMs and their contents and enable physicians and researchers a direct comparison of these contents. The ICF was established as a useful framework for examining and comparing IBD-specific PROMs and their items with respect to the areas of functioning and disability covered. This information can be useful in selecting PROMs for clinical practice, as well as for any kind of investigations in which functioning and disability of persons with IBD is a relevant study outcome.