Clinical outcome assessment may be a more useful tool for supporting inflammatory bowel disease clinical practice than just patient-reported outcome measures.

Abstract

Patients with Inflammatory Bowel Disease approach their treating specialists with a multitude of symptoms. The responses from patient-reported outcome measures (PROM) are challenging to assess and generalize. Most patients who have active disease are happy to discuss their health concerns and get them resolved. Some are wary of the consequences, such as the need for additional investigations, getting hospitalized, intensification of drug therapy or the need for more frequent follow-up. If research surveys or PROM are returned, patients will likely hide sensitive details. They may not reveal the truth, and even though most research surveys are anonymous, the details could be biased. Many patients underreport embarrassing behaviours and thoughts in interviews. Some patient's tendency to deceive remains strong, as there is no motivation to be truthful. Patients often second-guess what the clinician wants to know and then change their answers (socially desirable responding) depending on the survey setting, which can impact study findings. PROM might not be sufficient on their own as reliable measures to reflect disease activity or severity. Research surveys can result in significant misreporting on sensitive topics. The need of the hour is to have flexible endpoints, which can be achieved by appropriate use of clinical outcome assessment wherein treating clinicians' objective observations and assessment are considered.