Identification of Nonresponse to Treatment Using Narrative Data in an Electronic Health Record Inflammatory Bowel Disease Cohort

Background: Electronic health records, increasingly a part of healthcare, provide a wealth of untapped narrative free text data that have the potential to accurately inform clinical outcomes. Methods: From a validated cohort of patients with Crohn's disease or ulcerative colitis, we identified patients with >= 1 coded or narrative mention of monoclonal antibodies to tumor necrosis factor alpha. Chart review by ascertained true use of therapy, time of initiation, and cessation of treatment, and also clinical response stratified as nonresponse, partial, or complete response at 1 year. Internal consistency was assessed in an independent validation cohort. Results: A total of 3087 patients had a mention of an antibodies to tumor necrosis factor alpha. Actual therapy initiation was within 60 days of the first coded mention in 74% of patients. In the derivation cohort, 18% of antibodies to tumor necrosis factor alpha starts were classified as nonresponse at 1 year, 21% as partial, and 56% as complete response. On multivariate analysis, the number of narrative mentions of diarrhea (odds ratio 1.08; 95% confidence interval, 1.02-1.14) and fatigue (odds ratio 1.16; 95% confidence interval, 1.02-1.32) was independently associated with nonresponse at 1 year (area under the curve 0.82). A likelihood of nonresponse score comprising a weighted sum of both demonstrated a good dose-response relationship across nonresponders (2.18), partial (1.20), and complete (0.50) responders (P < 0.0001) and correlated well with need for surgery or hospitalizations. Conclusions: Narrative data in an electronic health record offer considerable potential to define temporally evolving disease outcomes such as nonresponse to treatment.