Ulcerative colitis (UC), a type of inflammatory bowel disease (IBD) that can cause abdominal pain and bloody diarrhea, affects at least 2 million people living in the United States (U.S.) and European Union (EU) alone.1,2 Results from a recent global survey fielded in 10 countries among 2,100 adults living with primarily moderate-to-severe UC and 1,254 gastroenterologists suggested that, around the world, adults living with UC share similar life impacts that many are not comfortable discussing with their gastroenterologists.3,4
Here are five challenges of living with UC that people with the disease may not talk about:
1) The impact on everyday activities
67 percent (n=1417/2100) of adults living with UC strongly (24%; n=512/2100) or somewhat (43%; n=905/2100) agreed that they often feel like they spend more time in the bathroom than anywhere else.3 Additionally, 65 percent (n=1365/2100) of adults living with UC strongly (22%; n=455/2100) or somewhat (43%; n=910/2100) agreed that they felt like their disease controls their life rather than them controlling their disease.3 Surveyed adults living with UC also reported missing, on average, anywhere between five and 33 events (e.g. days of work or school, social events, travel plans, or child events) in the previous 12 months.3
2) The mental and emotional effects
Even though there's a lot of focus on the physical symptoms of UC, the emotional health impacts can also be significant. A majority (84%; n=1769/2100) of adults living with UC strongly (42%; n=873/2100) or somewhat (43%; n=896/2100) agreed that UC is mentally exhausting.3 Nearly one-third (30%; n=636/2100) of adults living with UC wished their gastroenterologists better understood how UC affects their emotional health,3 but more than half (51%; n=645/1254) of gastroenterologists said they never discuss the impact of UC on patients' emotional health.4
3) Managing the impact of UC on personal relationships and sexual intimacy is important to patients
Given the stigma and embarrassment that some people living with UC may feel, UC can be difficult to talk about with loved ones. 32 percent of adults living with UC (n=667/2100) said UC having less of an impact on their sex life and personal relationships is important to them,3 yet more than half (55%; n=1154/2100) strongly (19%; n=404/2100) or somewhat (36%; n=750/2100) agreed that they didn't feel comfortable talking to their gastroenterologists about these topics.3
4) The impact on major life decisions such as career choices and education
68 percent of adults living with UC (68%; n=1436/2100) strongly (29%; n=615/2100) or somewhat (39%; n=822/2100) agreed they felt like they would be a "more successful person" if they did not have UC,3 and more than half (51%; n=638/1254) of gastroenterologists strongly (8%; n=95/1254) or somewhat (43%; n=543/1254) agreed that their patients would approach their career or education differently if they did not have UC.4
5) Letting UC symptoms define their "new reality"
Survey findings suggested that adults living with UC may have accepted that certain UC-related symptoms like abdominal pain are part of a new reality that they can't change. 62 percent (n=777/1254) of gastroenterologists strongly (7%; n=88/1254) or somewhat (55%; n=689/1254) agreed that the majority of their patients have accepted that having UC means they have to settle for a reduced quality of life.4
"To move beyond just living with ulcerative colitis, we encourage patients to have an open dialogue with their gastroenterologist about all aspects of the disease, including their personal disease management goals and sensitive topics such as emotional health," said Michael Osso, President & CEO of the Crohn's & Colitis Foundation. "People living with UC should know that they are not alone and that there are resources that can help fill in the information gaps and connect them with other people with UC."
For more information about ulcerative colitis, visit the Crohn's & Colitis Foundation website (www.crohnscolitisfoundation.org). Visit Pfizer.com/UCNarrative to learn more about findings from the global UC Narrative survey.
About the UC Narrative Global Survey Methodology
• The UC Narrative patient survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23, 2017, and February 9, 2018, among 2,100 adults ages 18+ residing in Australia (215), Canada (215), Finland (105), France (169), Germany (210), Italy (210), Japan (210), Spain (214), the United Kingdom (251), and the United States (301) who have been diagnosed with ulcerative colitis (UC), have had an endoscopic procedure to confirm their diagnosis, have not had a colectomy, have been to a gastroenterologist or internist's office in the past 12 months, have ever taken a prescription medication for their UC (excluding those who have only ever taken 5-ASAs),ii and provided informed consent to complete the research.
• The primary goal of the survey was to characterize the experiences of UC patients who are believed to be living with moderate-to-severe disease or those who may be living with poorly controlled disease. The choice to focus on these patient types was based on the assumption that these groups (versus those with milder disease) were more likely in need of support and resources, which the survey could help better identify.
• To achieve the goal of focusing on those with moderate-to-severe disease, self-reported medication history was used as a proxy for disease severity. Patients with "moderate-to-severe" disease were defined as those who have ever taken a biologic or immunosuppressant for their UC, or have taken steroids for four or more of the past 12 months. Patients with a "milder" form of the disease were defined as those who have never taken a biologic or immunosuppressant, and those who have taken steroids for three or fewer months of the past 12 months. The research excluded patients who have never taken a prescription medication for their UC or have only ever taken a 5-ASA to control their UC. More than 80 percent of total completes were from patients whose disease was classified as "moderate-to-severe," using this definition, with "milder" patients capped at no more than 20 percent of total survey completes.
• The UC Narrative physician survey was conducted online and via telephonei by Harris Poll on behalf of Pfizer between August 23, 2017, and February 9, 2018, among 1,254 adults ages 18+ residing in Australia (90), Canada (80), Finland (17), France (154), Germany (152), Italy (157), Japan (151), Spain (151), the United Kingdom (153), and the United States (149) who practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,iii do not primarily practice in a long-term care facility or hospice setting, see at least 10 patients with UC each month (or a minimum of five patients with UC per month in Japan), with at least 10 percent of these patients currently taking a biologic medicine for their UC, and provided informed consent to complete the research.iv Physician results in the U.S. were weighted by region and years in practice by gender. In all other countries, physician results were weighted by age and/or gender to ensure alignment with the actual proportions in the population of gastroenterologists in each country.
• For both patient and physician data, for the global, 10-country total, a post-weight was applied to adjust for the relative size of each country's adult population within the total adult population across all countries surveyed. The unweighted sample sizes reflect the total number of patients and physicians who completed the survey in each country, while all reported percentages are calculated based on the weighted global total described here. Proportionate weighting for combining multi-country data into a single total is a common practice because it relies on externally recognized population data to achieve a global total that more accurately represents the real-world relative to the adult populations surveyed. There are limitations to this approach; when countries surveyed have widely varying population totals, the data from smaller countries may get weighted down within the total, thus reducing their share of voice when grouped together with the larger countries.
• In the United States, the research method and survey questionnaires were reviewed and received institutional review board (IRB) approval from WIRB-Copernicus Group.
i Telephone interviews were conducted among patients in France, the United Kingdom (UK), and the U.S., and among physicians in Australia and Canada.
ii Managing physician varied by country: in Australia, France, Spain, the UK, and the U.S., patients must have visited a gastroenterologist's office; those in Canada, Finland, Germany, Italy, and Japan must have visited a gastroenterologist or an internist's office.
iii Medical specialty varied by country: in Australia, France, Spain, the UK, and the U.S., all physicians were gastroenterologists; in Canada, Germany, and Italy, gastroenterologists and internists with a gastroenterology focus qualified; in Finland, gastroenterologists, gastroenterology surgeons, and internists with a gastroenterology focus qualified; and in Japan, gastroenterology internists, gastroenterology surgeons, and internists with a gastroenterology focus qualified.
iv Gastroenterologists in the U.S. also were duly licensed in the state they practice, did not practice in Vermont, were board certified, and were not associated with Kaiser Permanente.
1 Ng S.C. Worldwide Incidence and Prevalence of Inflammatory Bowel Disease in the 21st Century: A Systematic Review of Population-Based Studies. The Lancet, 2017; P2769-2778.
2 Danese S. Ulcerative Colitis. The New England Journal of Medicine. 2011; 365:1713-1725.
3 Data on file. Pfizer Inc, New York, NY. [UC Narrative Patient Survey. 2018.]
4 Data on file. Pfizer Inc, New York, NY. [UC Narrative Physician Survey. 2018.]
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