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Novel Questionnaire May Help Assess Quality of Life in IBD
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WASHINGTON — A novel measure of health-related quality of life demonstrated responsiveness to changes in disease activity in patients with inflammatory bowel disease, according to research presented at Digestive Disease Week.
Edward Lee Barnes, MD, of the division of gastroenterology and hepatology at the University of North Carolina School of Medicine, said the new questionnaire could offer an alternative to the proprietary Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and reduce patient burden.
“We aimed to create a novel patient-reported based evaluation, or PROBE, of quality of life,” Barnes said in his presentation. “With this measure, we aim to assess quality of life among patients with Crohn’s disease and ulcerative colitis, using publicly available patient reported outcome measures and to assess the psychosocial burden of IBD with minimal burden to the participants.”
Barnes and colleagues used data from the Crohn’s and Colitis Foundation’s IBD Partners internet cohort to analyze baseline and follow-up questions from several patient-reported outcome measures and disease activity indexes. They compared potential questions and assessed responsiveness to the measure to changes in disease activity.
Patients that completed both baseline and follow-up testing were included in the analysis (n = 4,854).
Patients were asked about anxiety, fatigue, pain interference with work and home life, IBD activity and more. Each question is scored 1 to 5, and the test uses an overall score of 0 to 30. When researchers evaluated patient PROBE scores, they found that the PROBE score correlated with disease activity from remission to flare (CD: 23.1 vs. 21; P < .001; UC: 25 vs. 22.2; P =.001) and in flare to remission (CD: 19.9 vs. 22.9; P < .001; UC: 22 vs. 23.7; P < .001).
Researchers compared the PROBE the SIBDQ among all patients with IBD, as well as among patients with CD and UC. Using Pearson correlation coefficient, they found a high correlation among patients with CD (r = 0.88) and patients with UC (r = 0.864).
Barnes and colleagues found that the PROBE test correlated well with the composite SIBDQ and demonstrated significant responsiveness to disease activity in both CD and UC.
“The PROBE was not developed by patient focus groups prior to introduction to the IBD Partners cohort. This may have been helpful in identifying those factors that are most important in quality of life among patients with Crohn’s disease and ulcerative colitis,” Barnes said. “We believe the PROBE can be used as a novel assessment for quality of life among patients with both ulcerative colitis and Crohn’s disease in other populations.” – by Alex Young
Reference :
Barnes EL, et al. Abstract 16. Presented at: Digestive Disease Week; June 2-5, 2018; Washington, D.C.
Disclosures: Barnes reports financial ties to Janssen Biotech. Please see the DDW faculty disclosure index for a list of all other authors’ relevant financial disclosures.
Perspective
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Stephen B. Hanauer, MD
The frequently used inflammatory bowel disease questionnaire (IBDQ) and a shorter version (SIBDQ) were developed to assess health related quality of life outcomes related to several domains (bowel symptoms, emotional health, systemic systems and social function) that have been validated for both ulcerative colitis and Crohn’s disease to correlate with disease activity indices such as the Crohn’s Disease Activity Index (CDAI). The IBDQ and SIBDQ were developed at McMaster University and are proprietary requiring payment for use in clinical studies.
Barnes and colleagues aimed to assess quality of life in IBD patients using publicly available patient reported outcome measures that are now mandated by the FDA and European regulators in conjunction with endoscopic evidence of endoscopic healing. Each PRO (anxiety, fatigue, satisfaction with ability to do things for fun, and depression) were associated with IBDQ domains and monitored during disease quiescence and flares.
The investigators offer a publicly available quality of life tool that needs to be further validated with biologic measures of disease activity and tested amongst varied patient populations.
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