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Evaluation of the Inflammatory Bowel Disease Questionnaire in Swedish patients with Crohn's disease
Linköping University, Department of Clinical and Experimental Medicine, Infectious Diseases. Linköping University, Faculty of Health Sciences.
Division of Gastroenterology, Department of Medicine, County Hospital Ryhov, Jönköping, Sweden.
Linköping University, Faculty of Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Gastroenterology and Hepatology. Östergötlands Läns Landsting, Centre for Medicine, Department of Endocrinology and Gastroenterology UHL.
Division of Gastroenterology, Department of Medicine, Örebro University Hospital, Örebro, Sweden.
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2006 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, Vol. 41, no 8, 934-943 p.Article in journal (Refereed) Published
Abstract [en]

Objective. Health-related quality of life (HRQoL) is an important measure of inflammatory bowel disease (IBD) health outcome. The Inflammatory Bowel Disease Questionnaire (IBDQ) comprising 32 items grouped into four dimensions is a widely used IBD-specific HRQoL instrument. The purpose of this study was to evaluate the validity, reliability and responsiveness of the Swedish translation of the IBDQ in patients with Crohn's disease (CD). Material and methods. Four hundred and forty-eight patients with CD completed the IBDQ and three other HRQoL questionnaires (Rating Form of IBD Patient Concerns, Short Form-36, and the Psychological General Well-Being Index) in connection with their regular visit at the outpatient clinic. Disease activity was assessed by the physician on a 4-point Likert scale. Thirty-two patients who were stable in remission completed the questionnaires a second time, 4 weeks later. A total of 418 patients repeated all measurements after 6 months. Results. The dimensional scores were highly correlated with other measures of corresponding aspects of HRQoL and were significantly better in remission than in relapse. High test-retest correlations indicated good reliability. Responsiveness was confirmed in patients whose disease activity changed over time. However, high correlations between the dimensions, poor correlations between items within each dimension, and factor analysis all indicated that the original grouping of the items is not valid for Swedish CD patients. Conclusions. Although the Swedish IBDQ has good external validity, reliability and responsiveness for patients with CD, our results did not support the original grouping of the items. © 2006 Taylor & Francis.

Place, publisher, year, edition, pages
2006. Vol. 41, no 8, 934-943 p.
Keyword [en]
Health, Health-related quality of life, Inflammatory bowel disease, Quality of life
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-50177DOI: 10.1080/00365520500529488OAI: diva2:271073
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2011-03-09Bibliographically approved
In thesis
1. Crohn’s Disease in Sickness and in Health: Studies of Health Assessment Strategies and Impact on Health-Related Quality of Life
Open this publication in new window or tab >>Crohn’s Disease in Sickness and in Health: Studies of Health Assessment Strategies and Impact on Health-Related Quality of Life
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aims. Crohn’s disease (CD) is a chronic inflammatory bowel disease (IBD) with potentially deleterious effects on well-being and daily-life functioning. A complete picture of health status in CD therefore comprises both disease activity (DA) and health-related quality of life (HRQL). Several measures of DA and HRQL in CD have been developed. Some have gained prominence as standard endpoints in clinical trials, but none has been validated in Swedish CD patients and their use in clinical practice has been limited. A conceptual health status model of five dimensions (Biological variables, Symptoms, Function, Worries, and Well-being) has been proposed for IBD health assessment, enabling the construction of the Short Health Scale (SHS), a four-item questionnaire intended to facilitate assessment and interpretation of HRQL in IBD.

The aims of this thesis were: (1) to evaluate the Swedish versions of the Inflammatory Bowel Disease Questionnaire (IBDQ) and the Rating Form of IBD Patient Concerns (RFIPC); (2) to evaluate the Short Health Scale; (3) to study the relationship between DA and HRQL variables by identifying determinants of DA outcome and by validating the SHS health status model; (4) to describe the spectrum of disease-related worries and repercussions on general HRQL in a context of social variables, sickness, and disability.

Methods. The thesis is based on clinical variables and HRQL data measured in a population-based cohort of 505 CD patients, consecutively included in conjunction with their regular outpatient visits at three hospitals (Jönköping, Örebro, Linköping). The HRQL questionnaires were evaluated regarding construct validity, reliability, and responsiveness. Multivariate analyses were used to investigate the relationship between Crohn’s Disease Activity Index (CDAI) and physician-assessed DA. The SHS health status model was validated with structural equation modelling (SEM). Disease-related worries and concerns, general HRQL, social variables, sickness, and work disability were compared with data from background population or patients with ulcerative colitis (UC).

Results. The IBDQ had good validity, reliability, and responsiveness, but the original dimensional structure was not supported. The RFIPC was valid, and reliable, but less sensitive to change in disease activity. The SHS had the highest completion rate and proved adequate psychometric properties. The CDAI correlated weakly with the physician’s appraisal of disease activity, being more influenced by subjective health perception than objective disease activity. SEM showed that the SHS model had a good fit to measured data, explaining >98% of the covariance of the variables. Worries and general HRQL impairment were greater in CD than in UC, especially for women. Disease complications and impaired life achievements elicited most worries. CD patients had lower educational level. Female patients were more often living single. The rates of long-term sickness and disability were doubled compared with background population, with worse outcome for women.

Conclusions. The IBDQ, the RFIPC, and the SHS all demonstrated adequate psychometric properties. The SHS was easier to administer and provided a more comprehensive picture of subjective health status. The weak correlation between CDAI and physician-assessed DA was explained by a strong influence of subjective variables on CDAI, stressing the importance of assessing DA and HRQL separately. The SHS health status model was further supported by SEM. CD has tangible effects on subjective health perception, worries and work capacity, especially for women.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2011. 87 p.
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1228
National Category
Medical and Health Sciences
urn:nbn:se:liu:diva-66249 (URN)978-91-7393-227-1 (ISBN)
Public defence
2011-04-08, Berzeliussalen, Hälsouniversitetet, Campus US, Linköpings universitet, Linköping, 13:00 (Swedish)
Available from: 2011-03-09 Created: 2011-03-09 Last updated: 2012-03-22Bibliographically approved

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Bodemar, GöranAlmer, SvenStröm, MagnusHjortswang, Henrik
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Infectious DiseasesFaculty of Health SciencesGastroenterology and HepatologyDepartment of Endocrinology and Gastroenterology UHLDepartment of Clinical and Experimental Medicine
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Scandinavian Journal of Gastroenterology
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