P298 Patient-reported outcomes: the ICHOM standard set for IBD in real-life practice helps quantify deficits in current care

D. Wong, R. Kantschuster, L. Matini, D. Simadibrata, M. Lepetyukh, J. Wilson, O. Brain, R. Palmer, T. Ambrose, J. Satsangi, S. Travis, A.J. Walsh

John Radcliffe Hospital, Oxford University Hospitals, Translational Gastroenterology Unit, Oxford, UK


Ulcerative colitis (UC) or Crohn’s disease (CD) are associated with symptoms that lead to reduced quality of life and increased healthcare utilisation. The patient reported outcome (PRO) tools are key to documenting outcomes that matter most to patients and are increasingly important to commissioners of health care seeking value. We report the first series of the ICHOM Standard Set for inflammatory bowel disease (IBD).


Patients treated for UC or CD in our tertiary referral centre are offered enrolment into the TrueColours IBD web-based PRO collection programme. This functions through email prompts, directly linked to validated questionnaires. Prompts for symptoms (daily SCCAI for UC and HBI for CD); quality of life (fortnightly IBD-Control); and other outcomes (baseline and 3 monthly ICHOM Standard Set), including data on steroid use, hospital admission and other measures through internationally agreed criteria.


The first 500 consecutive patients enrolled (401 UC, 99 CD) were studied. 274 (55%) were female, mean age 40 years (sd 15), and mean BMI 26 (sd 6). 22/500 (5%) were current smokers. Baseline medications at the time of registration were no therapy 6%, topical therapies 21%, 5ASA 49%, thiopurines 24%, methotrexate 6%, budesonide 3%, prednisolone 10%, advanced therapies 37%. (adalimumab 13%, golimumab <1%, infliximab 9%, tofacitinib 1%, ustekinumab 1%, vedolizumab 16%). In the previous 12 months, prednisolone use was reported by 148 (37%) patients with UC vs. 25 (25%) patients with CD, p = 0.02: 107 (21%) for <3 months and 66 (13%) for >3 months. 61 (12%) patients reported requiring an IBD-related intervention (11% UC vs. 17% CD) and 25 (5%) reported an unplanned hospital admission (4% UC vs. 8% CD). Eighty-one (16%) participants had required at least one hospital admission in the preceding year, exceeded by 101 (20%) requiring at least one emergency department presentation in the same period. There were high rates of fatigue (53%) and mood disturbance (26%). Eighty-two (16%) felt they needed a treatment change, and 136 (27%) felt their current treatment was not useful for their IBD.


Outcomes reported by patients illustrate the scale of the therapeutic deficit in current care. The ICHOM Standard Set acts as a benchmark for comparing outcomes between institutions.