Background 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). Methods 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. Results 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%). Conclusion 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.
Background The SCCAI was designed to facilitate assessment of disease activity in ulcerative colitis (UC). We aimed to interrogate the metric properties of individual items of the SCCAI using item response theory (IRT) analysis, to simplify and improve its performance. Methods The original 9-item SCCAI was collected through TrueColours, a real-time software platform which allows remote entry and monitoring of patients with UC. Data were securely uploaded onto Dementias Platform UK Data Portal, where they were analysed in Stata 16.1 SE. A 2-parameter (2-PL) logistic IRT model was estimated to evaluate each item of the SCCAI for its informativeness (discrimination). A revised scale was generated and re-assessed following systematic removal of items. Results SCCAI data for 516 UC patients (41 years, SD = 15) treated in Oxford were examined. After initial item deletion (Erythema nodosum, Pyoderma gangrenosum), a 7-item scale was estimated. Discrimination values (information) ranged from 0.41 to 2.52 indicating selected item inefficiency with three items < 1.70 which is a suggested discriminatory value for optimal efficiency. Systematic item deletions found that a 4-item scale (bowel frequency day; bowel frequency nocturnal; urgency to defaecation; rectal bleeding) was more informative and discriminatory of trait severity (discrimination values of 1.50 to 2.78). The 4-item scale possesses higher scalability and unidimensionality, suggesting that the responses to items are either direct endorsement (patient selection by symptom) or non-endorsement of the trait (disease activity). Conclusion Reduction of the SCCAI from the original 9-item scale to a 4-item scale provides optimum trait information that will minimise response burden. This new 4-item scale needs validation against other measures of disease activity such as faecal calprotectin, endoscopy and histopathology.
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