Abstract
Inflammatory Bowel Disease (IBD) is a lifelong illness requiring close management. Prompt disease recognition and tight control of disease activity reduces disease morbidity and improves outcomes1. Endoscopy with histologic examination is the gold standard for assessing “deep remission2.” However, frequent endoscopic evaluation is not always feasible or cost effective. Fecal Calprotectin (FC), a paradigm shifting biomarker, is both sensitive and specific for histologic inflammation in IBD2. However, the efficacy of this test rests on patient’s willingness to handle and submit stool samples. Studies investigating FC non-compliance are scarce, and all have been performed outside the US. Thus, we elected to survey our patients to assess barriers to FC compliance.
We recruited 104 participants with Crohn’s disease (CD) or Ulcerative Colitis (UC) from our IBD clinic to participate in a prospective cross-sectional study. We administered an author-designed mixed-method questionnaire consisting of 23 questions with multiple choice, yes/no, rank order, and open-ended questions. The primary outcomes of interest were risk factors for non-compliance. Patient compliance over a two year period (1/2018 through 1/2020) was self-reported and verified retrospectively by the authors. Responses to questions were grouped according to level of FC compliance (<50% compliance, 50-99% compliance, 100% compliant). Categorical variables were analyzed using chi2 and Fishers exact test. Continuous variables were analyzed using Mann-Whitney and Kruskal-Wallis tests.
Among the 104 participants surveyed, 56 were always compliant with FC testing (53.8%).The remaining 48 participants fell on a spectrum of compliance, with most participants completing between 50-75% of fecal calprotectin tests over the study period (n=29, 60.4%). Only 8 participants were “never” compliant. Physician determined compliance was significantly associated with participant completion (p=0.001). Number of “no-show” clinic visits was associated with FC compliance (p=0.013). Participants who reported FC testing embarrassing were significantly less likely to be compliant (p=0.037), and were less likely to report that they found stool testing important (p=0.020). In the qualitative portion of the survey, recurring frustrations included inconvenience of testing, embarrassment associated with stool submission, and lack of streamlined sample submission.
Fecal calprotectin is a valuable tool for IBD monitoring, but testing can be cumbersome and usefulness is limited by compliance. Embarrassment was a significant compliance barrier, suggesting that improved education and protocols for laboratory discretion would improve FC submission and patient experience.
