Concordance and discordance between patient-defined remission and remission based on validated patient-reported outcome measures among patients with ulcerative colitis and Crohns disease

Background: Patients with Inflammatory Bowel Disease (IBD, which includes ulcerative colitis and Crohn’s disease) experience periods of disease flares and remission. However, there may be differences in a patient’s own definition of remission and remission based on validated patient reported outcome (PRO) measures. This secondary data analysis seeks to inform our understanding of the concordance and discordance between patient-defined remission and
remission based on PROs and compare differences based on clinical and demographic factors in those with ulcerative colitis or Crohn’s disease.
Methods: Data was obtained from the Crohn’s and Colitis Foundation’s IBD Qorus Learning Health System, which is a collaboration of patients and healthcare providers with the goal of continual quality improvement. Within IBD Qorus, patients, ages 18 and older, completed an online survey approximately one week before their clinic visit. Surveys included a variety of disease-related questions including patient-defined remission and PROs. Patients who completed surveys between September 2019 and February 2021 were included in the analysis. R and STATA 17 were used to assess sensitivity, specificity, concordance, and discordance. Logistic regression models were built to predict discordance, using generalized estimating equations.
Results: There were 2004 unique participants (806 ulcerative colitis and 1198 Crohn’s disease) with 3257 eligible visits. For patients with ulcerative colitis, there was 22% discordance between patient-defined remission and the PRO. For patients with Crohn’s disease, there was 32% discordance between patient-defined remission and the PRO. Among ulcerative colitis patients in remission as defined by PROs, those who had a disease duration of less than 5 years had higher odds of discordance compared to those with disease duration of more than 15 years (OR: 1.97, 95% CI: 1.12, 3.49). Additionally, those who had lower health confidence scores of 0-6 (OR: 9.64, 95% CI: 4.64, 20.00) or scores of 7-9 (OR: 4.46, 95% CI: 2.33, 8.54) were more likely to report discordance compared to those with a health confidence score of 10. Likewise, patients with Crohn’s disease who had a disease duration of less than 5 years (OR: 1.45, 95% CI: 0.99, 2.14) or a health confidence of 6 and lower (OR: 11.75, 95% CI: 7.37, 18.75) or 7-9 (OR: 3.57, 95% CI: 2.46, 5.17) had higher odds of discordance. Among patients with active disease as defined by PROs, those with a lower patient confidence had lower odds of discordance. Patients with ulcerative colitis who have patient confidence of 6 and lower (OR: 0.06, 95% CI: 0.03, 0.13) or health confidence of 7-9 (OR: 0.23 95% CI: 0.12, 0.43) had a lower odds of discordance compared to those with a health confidence score of 10. Crohn’s disease patients with lower patient confidence of 6 and below (OR: 0.08, 95% CI: 0.04, 0.16) or 7-9 (OR: 0.28, 95% CI: 0.14, 0.55) had lower odds of discordance compared to those with a health confidence score of 10.
Conclusion: Discordance exists between patient-defined remission and PROs among patients with UC and CD. Patients with Crohn’s disease had higher discordance than those with ulcerative colitis. When examining demographic and clinical predictors of discordance, health confidence was significant across both ulcerative colitis and Crohn’s disease. Future research is needed to better understand the concept of health confidence and its relationship with accuracy of patient-reported remission.