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Timmer, A. ; Kemptner, D.* ; Takses, A.* ; Klebl, F.* ; Jöckel, K.-H.*

A survey-based index was validated for measuring disease activity in inflammatory bowel disease: An evaluation study.

J. Clin. Epidemiol. 62, 771-778 (2009)

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Objective: Crohn's disease is a highly distressful chronic disorder, characterized by frequent relapses. A symptom-based disease activity index was developed for use in epidemiological research. Study Design and Setting: One hundred and six consecutive patients presenting to a tertiary referral hospital in Southern Germany in 2004-2005 participated in a questionnaire-based survey. As a reference standard, disease activity was assessed using a clinical index (Crohn's Disease Activity Index [CDAI], based on symptoms reported to physician, laboratory markers, and physician assessed signs). A linear regression equation was calculated based on the survey data on severity of symptoms (dependent variable: CDAI). Survey index scores (S-CDAI) were then calculated using the estimated coefficients for pain, stools, and general well-being in an independent data set. Results: S-CDAI and CDAI showed moderate agreement (kappa = 0.57 for relapse vs. remission). High activity (high S-CDAI) correlated negatively with high quality of life (disease specific: Short Inflammatory Bowel Disease Quality-of-Life Questionnaire; r = -0.67; generic: Short Form 36 physical summary score, r = -0.47). Test-retest reliability and sensitivity for change were good (intraclass correlation coefficient 0.81). Conclusion: A useful, valid, and reliable disease activity score was developed, which will facilitate meaningful survey research in this chronic disorder.

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