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Original research
Development and test–retest reliability of a new, self-report questionnaire assessing healthcare use and personal costs in people with inflammatory bowel disease: the Inflammatory Bowel Disease Resource Use Questionnaire (IBD-RUQ)
  1. Chris Roukas1,
  2. Jonathan Syred2,
  3. Vladimir Sergeevich Gordeev1,
  4. Christine Norton2,
  5. Ailsa Hart3,
  6. Borislava Mihaylova1,4
  1. 1Wolfson Institute of Population Health, Queen Mary University of London, London, UK
  2. 2Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK
  3. 3Department of Surgery and Cancer, St Mark's Hospital, Harrow, UK
  4. 4Nuffield Department of Population Health, University of Oxford, Oxford, UK
  1. Correspondence to Mr Chris Roukas, Centre for Evaluation and Methods, Queen Mary University of London, London, E1 4NS, UK; c.roukas{at}


Background and aims The increasing prevalence of inflammatory bowel disease (IBD) poses a substantial economic burden globally on health systems and societies. Validated instruments to collect data on healthcare and other service utilisation by patients with IBD are lacking. We developed a self-report patient questionnaire to capture key resource utilisation from health services, patient and societal perspectives.

Methods The IBD Resource Use Questionnaire (IBD-RUQ), developed by a multidisciplinary team, including patients, comprises 102 items across the six categories of outpatient visits, diagnostics, medication, hospitalisations, employment and out-of-pocket expenses over the past three months. The test–retest reliability of the IBD-RUQ was studied by administering it twice among patients with IBD with a 2-week time gap. The intraclass correlation coefficients and the average cost from the healthcare, societal and patient perspectives, between test and retest assessments, overall and by service category, were summarised.

Results The IBD-RUQ captures health service use, employment and out-of-pocket expenses. Of 55 patients who completed the first questionnaire, 48 completed the retest questionnaires and were included in the analyses. Test–retest reliability for categories of medications, diagnostics, specialist outpatient and inpatient services, and days off work due to IBD ranged from moderate to excellent; primary care visits showed more limited reliability. The annualised average self-reported health service, out-of-pocket and loss of productivity costs were £4844, £320 and £545 per patient, respectively.

Conclusions The IBD-RUQ is a reliable and valid self-report measure of resource utilisation in adults with IBD and can be used to measure costs associated with IBD.

  • IBD

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  • Contributors CR, JS, CN, AH and BM designed the study; CN and BM supervised the study; CR and JS implemented the study; CR and VSG performed the statistical analyses. All authors had full access to all the data in the study, contributed to analysis, interpretation, drafting of the manuscript, critical revision and final manuscript approval. CR is responsible for the overall content as guarantor.

  • Funding This work was supported by the UK National Institute for Health Research Programme Grants for Applied Research Programme ‘(grant number RP-PG-0216-20001)’. CR is supported by a PhD studentship from Bowel Research UK.

  • Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research, the NHS or the Department of Health and Social Care or Crohn’s and Colitis UK.

  • Competing interests No.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.