Patient Reported Outcomes: the ICHOM Standard Set for inflammatory bowel disease in real life practice helps quantify deficits in current care.

Abstract

Patient reported outcome measures (PROMs) are key to documenting outcomes that matter most to patients and are increasingly important to commissioners of healthcare seeking value. We report the first series of the ICHOM Standard Set for Inflammatory Bowel Disease (IBD). Patients treated for ulcerative colitis (UC) or Crohn's disease (CD) in our centre were offered enrolment into the web-based TrueColours-IBD programme. Through this programme, email prompts linking to validated questionnaires were sent for symptoms, quality of life, and ICHOM IBD outcomes. The first 1,299 consecutive patients enrolled (779 UC, 520 CD) were studied with median 270 days of follow up (IQR 116-504). 671 (52%) were female, mean age 42 years (sd 16), mean BMI 26 (sd 5.3). 483 (37%) were using advanced therapies at registration. Median adherence to fortnightly quality of life reporting and quarterly outcomes was 100% [IQR48-100%] and 100% [IQR75-100%], respectively. In the previous 12 months, prednisolone use was reported by 229 (29%) patients with UC vs. 81 (16%) with CD, p<0.001: 202 (16%) for <3 months and 108 (8%) for >3 months. 174 (13%) patients reported an IBD-related intervention and 80 (6%) reported an unplanned hospital admission. There were high rates of fatigue (50%) and mood disturbance (23%). Outcomes reported by patients illustrate the scale of the therapeutic deficit in current care. Proof of principle is demonstrated that PROM data can be collected continuously with little burden on healthcare professionals. This may become a metric for quality improvement programmes, or to compare outcomes.