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Crohn’s Disease in Sickness and in Health: Studies of Health Assessment Strategies and Impact on Health-Related Quality of Life
Linköping University, Department of Clinical and Experimental Medicine, Gastroenterology and Hepatology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Centre, Department of Endocrinology and Gastroenterology UHL.
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.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1228
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-66249ISBN: 978-91-7393-227-1OAI: oai:DiVA.org:liu-66249DiVA: diva2:402700
Public defence
2011-04-08, Berzeliussalen, Hälsouniversitetet, Campus US, Linköpings universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2011-03-09 Created: 2011-03-09 Last updated: 2012-03-22Bibliographically approved
List of papers
1. Evaluation of the Inflammatory Bowel Disease Questionnaire in Swedish patients with Crohn's disease
Open this publication in new window or tab >>Evaluation of the Inflammatory Bowel Disease Questionnaire in Swedish patients with Crohn's disease
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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.

Keyword
Health, Health-related quality of life, Inflammatory bowel disease, Quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-50177 (URN)10.1080/00365520500529488 (DOI)
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2011-03-09Bibliographically approved
2. Worries and concerns in a large unselected cohort of patients with Crohns disease
Open this publication in new window or tab >>Worries and concerns in a large unselected cohort of patients with Crohns disease
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2010 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, Vol. 45, no 6, 696-706 p.Article in journal (Refereed) Published
Abstract [en]

Objective. Disease-related worries constitute an important dimension of patient-reported perception of health status in inflammatory bowel disease (IBD). The Rating Form of IBD Patient Concerns (RFIPC) questionnaire is purported to measure IBD-related worries. This study evaluated the psychometric properties of a Swedish translation of RFIPC in an unselected population of Crohns disease (CD) patients. The degree and nature of the worries were characterized and predictive factors for outcome of RFIPC and underlying dimensions were identified. Material and Methods. The RFIPC was completed by 447 CD patients in conjunction with regular visits. A physician global assessment of disease activity and four other health-related quality of life (HRQL) questionnaires were used for construct validity. Reliability and responsiveness were evaluated with follow-up visits. Underlying dimension and predictive factors were identified with factor analysis and multiple linear regression analysis. Results. Test-retest reliability was 0.90, correlation with corresponding HRQL measures 0.60-0.80 and responsiveness ratio 0.84. Median RFIPC sum score was lower than in previous studies. Top three concerns were ostomy, energy level and bowel control. Four dimensions were identified in descending order of concern: disease-related complications, daily-life achievements, intimacy, and stigmatization. Predictors of RFIPC score were disease activity, gender, and BMI (p andlt; 0.001-0.008). Conclusions. The Swedish version of RFIPC exhibited an adequate psychometric performance in CD patients, but was less sensitive to change in disease activity. The patients were more concerned about complications and achievement than intimacy and stigmatization. The strongest predictors of more worry were active disease, female gender and higher BMI.

Place, publisher, year, edition, pages
Taylor and Francis, 2010
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-56518 (URN)10.3109/00365521003734141 (DOI)000277365200008 ()
Available from: 2010-05-21 Created: 2010-05-21 Last updated: 2011-03-09Bibliographically approved
3. Short health scale: A valid, reliable, and responsive instrument for subjective health assessment in Crohn's disease
Open this publication in new window or tab >>Short health scale: A valid, reliable, and responsive instrument for subjective health assessment in Crohn's disease
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2008 (English)In: Inflammatory Bowel Diseases, ISSN 1078-0998, E-ISSN 1536-4844, Vol. 14, no 1, 47-52 p.Article in journal (Refereed) Published
Abstract [en]

Background: Health-related quality of life (HRQoL) is an essential part of inflammatory bowel disease (IBD) assessment. The Short Health Scale (SHS), an HRQoL questionnaire in which the patients rate the disease impact on 4 important aspects of subjective health (symptoms, function, worry, and general well-being) was demonstrated in a previous study to be valid, reliable, and responsive in patients with ulcerative colitis. The present study evaluates the SHS in patients with Crohn's disease (CD). Methods: In all, 367 CD patients completed the SHS and 4 other HRQoL questionnaires (IBDQ, SF-36, RFIPC, and PGWB) at their regular outpatient visits. Then 330 patients completed the questionnaires at a second visit 6 months later. In addition, reliability data were obtained from repeat measurements 4 weeks after the first visit in 40 patients stable in remission. Results: Patients in remission scored better on all 4 questions than those with active disease (P < 0.001). All 4 questions were strongly correlated with the corresponding dimensions of the other HRQoL questionnaires (rS = 0.74-0.83). Reliability was confirmed with strong test-retest correlations (rS = 0.69-0.82) and intraclass correlation coefficients (0.66-0.77). Patients who changed from remission to active disease or vice versa showed a significant change in all 4 SHS scores (P < 0.005). Conclusions: SHS is a valid, reliable and responsive HRQoL instrument also in patients with CD. It is easily completed by the patient and requires no further calculation by the investigator. SHS gives a comprehensive overview of the main aspects of the patient's subjective health perception and is a useful tool in both clinical practice and clinical studies. Copyright © 2007 Crohn's & Colitis Foundation of America, Inc.

Keyword
Bowel disease, Health, Health-related quality of life, Inflammatory, Quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-47877 (URN)10.1002/ibd.20255 (DOI)
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2011-03-09Bibliographically approved
4. Factors Predicting the Outcome of Disease Activity Assessment in Crohns Disease
Open this publication in new window or tab >>Factors Predicting the Outcome of Disease Activity Assessment in Crohns Disease
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2009 (English)In: Inflammatory Bowel Diseases, ISSN 1078-0998, E-ISSN 1536-4844, Vol. 15, no 12, 1859-1866 p.Article in journal (Refereed) Published
Abstract [en]

Background: The Crohns Disease Activity Index (CDAI) has become the gold standard for assessment of disease activity in CD. This study investigated the relationship between CDAI and the physicians global assessment of disease activity (PGA) and whether different demographic and disease-related factors predict the outcome. Methods: Multiple linear regression analysis was used to investigate the relationship between CDAI and PGA obtained from 405 CD patients. Predictors of the CDAI and the PGA outcome were identified. Results: The correlation between CDAI and PGA was moderate. In patients with CDAI greater than 150, 72% of the total score were derived froth the subjective variables. The regression coefficients were not significant for 3 of the CDAI variables. In regression analysis, C-reactive protein (CRP), stenosis, smoking, bowel resection, concomitant disease, and gender predicted the CDAI outcome. The PGA outcome was predicted only by CRP, stenosis, and fistula. Conclusions: The correlation between CDAI and PGA was moderate and the subjective variables had a high impact on CDAI. Factors with no obvious relation to inflammatory activity predicted the outcome of CDAI, but not PGA. In trials of CD therapies, separation of subjective (symptoms, well-being) from objective (endoscopy, inflammatory markers) variables should be considered in the assessment of disease activity.

Keyword
inflammatory bowel disease; Crohns disease; outcome assessment; disease activity
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-52906 (URN)10.1002/ibd.20975 (DOI)
Available from: 2010-01-13 Created: 2010-01-12 Last updated: 2011-03-09Bibliographically approved
5. Structural Equation Modeling of the Relationship between Disease Activity and Health-related Quality of Life Variables in Crohn’s Disease
Open this publication in new window or tab >>Structural Equation Modeling of the Relationship between Disease Activity and Health-related Quality of Life Variables in Crohn’s Disease
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective. Disease activity (DA) and health-related quality of life (HRQL) are two major endpoints in outcome assessment of Crohn’s disease (CD).  A health concept model of the relationship between DA and HRQL encompassing five dimensions (biological variables, symptoms, function, worries, and general well-being) in inflammatory bowel disease (IBD) has been postulated previously, forming the basis of the IBD HRQL instrument, the Short Health Scale (SHS). This study evaluates the model, using structural equation modeling technique (SEM) on DA and HRQL data from a cohort of CD patients.

Methods. The relationships of the five dimensions represented by 14 health measures of 283 CD patients were analyzed by confirmatory factor analysis and SEM, using SPSS AMOS v18.0.

Results. All parameter estimates proved significant, and the goodness-of-fit indices were good (χ2=104.2, df=69, p=0.004, CFI=0.986, RMSEA=0.043). A revision of the structural pathway, in which well-being precedes worries, was suggested from empirical data.

Conclusion. The postulated health concept model proved to be a valid and plausible approximation of the relationship between disease activity and subjective health perception in CD. The results support the use of the SHS for subjective health assessment in CD.

Keyword
Crohn’s disease; inflammatory bowel disease; health-related quality of life; disease activity; structural equation modeling
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-66242 (URN)
Available from: 2011-03-09 Created: 2011-03-09 Last updated: 2011-03-09Bibliographically approved
6. Unfavourable outcome for women in a study of health-related quality of life, social factors, and work disability in Crohn’s disease
Open this publication in new window or tab >>Unfavourable outcome for women in a study of health-related quality of life, social factors, and work disability in Crohn’s disease
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2011 (English)In: European Journal of Gastroenterology and Hepathology, ISSN 0954-691X, E-ISSN 1473-5687, Vol. 23, no 8, 671-679 p.Article in journal (Refereed) Published
Abstract [en]

Objective. The aim was to describe health-related quality of life (HRQL) and social factors, sickness and disability variables in a large population-based cohort of patients with Crohn’s disease (CD).

Methods. HRQL was measured with SF-36 in 497 adult CD patients at three outpatient clinics. Comparisons were made with age-gender-matched background population and with ulcerative colitis (UC). Social factors, employment, sickness compensation, and disability pension for CD, were compared with national population registers.

Results. CD had a greater negative effect on HRQL than did UC. This difference was more pronounced for women. Compared with background population, CD patients had lower educational level, and had a two-fold rise in long-term sickness and disability pension rate. CD women had higher rates of sickness and disability than CD men and were more often living single, though procreation was not affected.

Conclusion. This study characterized the burden of CD in a large population-based cohort. CD had higher impact on HRQL, compared with UC. CD women had worse outcome in subjective health status, but not in objective assessment of disease activity. Women also had higher rates of sickness, disability pension, and single living. The mechanism underlying the gender-related inequalities in outcome for CD warrants further elucidation.

Place, publisher, year, edition, pages
Lippincott Wilkins and Williams, 2011
Keyword
Crohn’s disease; inflammatory bowel disease; health-related quality of life; disability; sickness; social factors
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-66248 (URN)10.1097/MEG.0b013e328346f622 (DOI)000292503100006 ()
Available from: 2011-03-09 Created: 2011-03-09 Last updated: 2011-08-10Bibliographically approved

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