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Outcome measures in paediatric IBD: Data from a tertiary level center in UK

Digestive and Liver Disease, September 30, 2013, Volume 45, Supplement 4, Page e285

Background:Quality of care research is less robust for paediatric Inflammatory Bowel Disease (IBD) than for other chronic illness, with no established measures available across Europe. Given the costs, resource utilization, morbidity associated with IBD and the evidence of a gap between recommended and delivered care, efforts to define IBD standards, measure performance are becoming increasingly important.

Objectives:Evaluation of a proposed outcome panel including self-reported outcome in a tertiary paediatric IBD setting. Evaluation of patient's perception of health.

Methods:The panel of outcome measures was designed based on a detailed literature review of currently available quality measures both within IBD and related immune mediated diseases. Patients, consecutively enrolled between November 2012 and February 2013, were asked to fill in a patient’ satisfaction questionnaire (adapted from QUOTE-IBD1) [1] . Data were collected from medical notes and electronic records (e-MR) and the self-reported outcomes were extrapolated from the questionnaire. The project was registered as an audit. Eighty-one questionnaires were handed out, 76 patients returned the questionnaire (96%) and were prospectively included in the study (mean age: 12.89 ± 2.5; M/F: 1.1/1). The following measures (% of children) were considered: (1) six months steroid free remission; (2) satisfactory growth and nutritional status; (3) unplanned admissions in the last 12 months; (4) school attendance in the last 12 months; (5) self reported health status.

Results:Forty-three patients (63%) had Crohn's disease (CD), 17% had Ulcerative Colitis (UC) and 20% had Inflammatory Bowel Disease Unclassified (IBDU). Overall 39% (CI 95%: 28–50) were found to be in remission, with 31.66% being in 6 months steroid free remission (CI 95%: 19.9–43.4). No differences were observed between CD, UC and IBDU patients. Patients with a satisfactory growth status (height > 10° percentile) were 83.4% (CI 95%: 74–92.8) and those with satisfactory nutritional status (BMI > 10° percentile) were 93.6% (CI 95%: 87.4–99.8). A quarter of the IBD patients (23.8%; CI 95%: 11–36.6) had at least one unplanned admission in the previous year, with a median length of stay of 2.5 days (IQR: 2.75). Regarding the school attendance only 38.1% (CI 95%: 23.3–52.9) achieved the average national school attendance (95%). Only 33.3% of patients reported their well-being as “very good or excellent” in the previous 3 months with 70.7% reporting their health as being much better or better compared to the previous year. The reported well-being was found to correlate significantly with disease activity index (r = −0.4133,p = 0.0007). The awareness of own disease status was found to be significantly higher (p = 0.042) in patient in remission (72.4%) compared to those not in remission (36.9%).

Conclusions:This study represents the first effort to test a set of proposed outcome and quality measures in the management of children with IBD. We found the vast majority of the tested measures to be useful for assessing the quality of care delivered to children with IBD in a local setting. Further studies are now required to be performed in other UK centers ultimately allowing to set a national standard and thereby continuing to improve the quality of care.


  • [1] I. van der Eijk, H. Sixma, T. Smeets, et al. Quality of health care in inflammatory bowel disease: development of a reliable questionnaire (QUOTE-IBD) and first results. Am J Gastroenterol. 2001;96:3329-3336 Crossref


Department of Paediatric Gastroenterology, Hepatol, Addenbrooke's Hospital, Cambridge, UK

lowast Corresponding author.