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International Study Reveals Disconnect Between Patients And Healthcare Professionals (Hcps) Over Symptom Burden In Ulcerative Colitis (UC)

October 22, 2012


The results of an international survey to assess patients’ and healthcare professionals’ (HCPs’) differing perceptions of ulcerative colitis have been presented at a Shire organised press briefing during the 20th United European Gastroenterology Week (UEGW) meeting in Amsterdam today. The ‘Mind the Gap’ survey, which was sponsored by Shire, is the first international study in ulcerative colitis (UC) to compare the views and beliefs of patients, physicians and specialist nurses. It identifies key differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives.1

Commenting on the findings, Professor Stefan Schreiber, Department for General Internal Medicine and Institute for Clinical Molecular Biology, Christian Albrechts University, Germany and lead author said “One of the main conclusions of the survey is that HCPs may underestimate the effect of specific UC symptoms on patients and may not recognise issues that are important to patients. For example, patients' classification of their own symptom severity revealed greater severity particularly when compared with physician estimates and more than half of patients stated that UC symptoms over the past year had affected their quality of life, while physicians estimated that just over one third of patients would have a reduced quality of life over the same period.”

In addition, the survey, which involved 775 patients with UC and 525 HCPs involved with the treatment of patients with the disease from five European countries (France, Germany, Ireland, Spain and the UK) and Canada, show:

  • On average, patients reported almost six flare ups in the previous year while physicians and nurses reported almost four1
  • Pain was key for patients, ranking as one of the top two most bothersome symptoms (with urgency), while physicians and nurses ranked urgency and stool frequency highest1
  • Seventy-two per cent of patients regarded HCPs as their main source of UC information. However, 59% reported not arranging regular visits to see their HCPs1

The results suggest that improved communication between patients and their physician or specialist nurse and better patient education could help to address these issues.1 “In this way, the patient would be more able to recognise the symptoms of active disease and participate in the selection of diagnostic and therapeutic options, which would contribute to more personalised management”, commented Professor Julian Panés, Gastroenterology Department, Hospital Clínic Barcelona, Spain, who led the survey alongside Professor Schreiber. “The findings therefore add to a growing body of evidence, which indicates that improved communication between patients and HCPs is fundamental to the successful management of ulcerative colitis.”


For further information please contact:

Katie Banks (Virgo HEALTH) [email protected] +44 7939 060701/+44 208 939 1271
Ed Purkis (Virgo HEALTH) [email protected] +44 7867 456756/+44 208 939 1261
Ingrid Jansen (Shire Corporate Communications) [email protected] +32 494 707 459/+32 14 404 360
Gwen Fisher (Shire Corporate Communications) [email protected] +1 484 595 9836



Notes to editors

About Mind the Gap

The survey included 775 patients with UC and 525 HCPs involved with the treatment of patients with the UC from five European countries and Canada. (Please note that 50 of the HCPs involved in the research were specialist nurses specialising in inflammatory bowel disease (IBD). However, these were only UK based.) The survey was conducted online between 10 June and 20 August 2010 in Canada, Germany, Ireland, Spain and the UK and between 20 January and 24 February 2011 in France and the results were originally published in BMC Gastroenterology in August 2012. The survey was sponsored by Shire PLC.

For further information on Mind the Gap, please visit: http://www.biomedcentral.com/content/pdf/1471-230X-12-108.pdf

About ulcerative colitis

UC is a chronic condition and a type of inflammatory bowel disease. It is estimated to affect 120 to 200 per 100,000 people in the Western world4 and the highest incidence and prevalence rates have been reported in Northern Europe, the UK and North America. The most common symptoms of UC include diarrhoea, abdominal cramps, rectal bleeding, frequent fever and nausea and the disease typically runs a relapsing-remitting course. There is currently no cure for the condition so the aim of treatment is to relieve symptoms during a flare up and prevent symptoms from returning during remission.

About Shire PLC

Shire enables people with life-altering conditions to lead better lives.

Through our deep understanding of patients’ needs, we develop and provide healthcare in the areas of:

  • Gastrointestinal conditions
  • Behavioral health
  • Rare Diseases
  • Regenerative Medicine

as well as other symptomatic conditions treated by specialists.

We aspire to imagine and lead the future of healthcare, creating value for patients, physicians, policymakers, payors and our shareholders.

For further information on Shire, please visit the Company’s website: www.shire.com.



  1. Schreiber S, Panés J, et al. Perception gaps between patients with UC and healthcare professionals: an online survey. BMC Gastroenterology 2012.
  2. Cosnes J, Gower-Rousseau C, et al. Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology 2011, 140:1785–1794.
  3. Loftus EV, Jr. Clinical epidemiology of inflammatory bowel disease: Incidence, prevalence, and environmental influences. Gastroenterology. 2004;126(6):1504–17.
  4. American Gastroenterological Association Web site. Inflammatory Bowel Disease page. Available at http://www.gastro.org/patient-center/digestive-conditions/inflammatory-bowel-disease. Accessed 10 October, 2012.