(BPT) - Imagine having the worst anxiety whenever you leave the house because you never know when you're going to be driving or walking and the urge to go to the bathroom is going to hit you. That is what it can be like for some people living with ulcerative colitis (UC), a disease that can cause abdominal pain, cramping and diarrhea.1,2
Many people living with UC have become all too familiar with running urgently to the bathroom multiple times a day; having to know where every public restroom is along their route to and from work; or needing to bring a change of clothes everywhere they go. The unpredictable nature of UC can impact a person’s emotional wellbeing.
Results from the UC Narrative, a global survey of 2,100 adults with a history of primarily moderate to severe UCi and 1,254 gastroenterologists (GIs) from 10 countries, including Australia, Canada, Finland, France, Germany, Italy, Japan, Spain, the United Kingdom (U.K.) and the United States (U.S.) found that impacts like these may cause people to alter their life choices and accept certain UC-related symptoms as a “new reality” that cannot be changed.3,4
Specifically, among adults with a history of UC surveyed:
- Eighty-four percentii agreed that UC is mentally exhausting.3
- Sixty-eight percent reported they felt they would be a “more successful person” if they did not have UC.3
- Nearly a third (32%) said it is important in managing their condition for UC to have less of an impact on their sex lives and personal relationships, yet 55 percent of adults living with UC said they don’t feel comfortable talking to their GI about these topics.3
- Thirty-one percent said they either decided to adopt, not to have any or more children, delayed having children, or stopped treatment to start a family because of their UC.3
Below are tips for having more effective conversations with your healthcare team:
- Don’t be afraid to “go there”: Make a point to share information about your emotional health with your GI on a regular basis.
- Get on the same page as your GI: Think about the day-to-day activities that you enjoy. Use those as the starting place for setting goals with your GI to help ensure that the plan for managing your disease is on track.
- Find multiple ways to communicate: Ask your GI for the best way to communicate with him or her if you need additional information after the appointment has ended. There may be another member of the healthcare team that is available.
- Access patient organizations and resources: Remember that you are not alone. There are many patient support organizations, like Crohn’s & Colitis Foundation, with resources that might be able to fill the information gaps and even help put you in touch with other people with UC.
Visit TalkingUC.com to learn more about the UC Narrative initiative and to access resources about changing the conversation surrounding UC.
About the Global UC Narrative Survey and Survey Methodology
The UC Narrative patient survey was conducted online and via telephoneiii 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 officeiv in the past 12 months, have ever taken a prescription medication for their UC (excluding those who have only ever taken 5-ASAs), and provided informed consent to complete the research. Raw data were not weighted at the individual country level, and are therefore only representative of the individuals who completed the survey.
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. Results from the UC Narrative patient sample survey may not reflect the experiences of the broader UC population.
The UC Narrative physician survey was conducted online and via telephoneiii by Harris Poll on behalf of Pfizer between August 23, 2017 and February 9, 2018, among 1254 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)v who practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,vi 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 (physicians were asked to think about their experiences treating patients in their practice whose UC is moderate to severe throughout the survey), and provided informed consent to complete the research. Physician results in the United States were weighted by region and years in practice by gender. In all other countries, physician results were weighted by age and gender to ensure alignment with the actual proportions in the population of gastroenterologists in each country.vii UC Narrative physician sample survey may not reflect the experiences of all gastroenterologists.
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 multicountry 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. Language referencing data of those who agree with the statement includes those who indicated both "strongly agree" or "somewhat agree" within the survey.
i Patients with “moderate-to-severe” disease were defined as those who have ever taken a biologic or immunosuppressant, 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.
ii Language referencing data of those who agree with the statement, includes those who indicated both “strongly agree” or somewhat agree” within the survey.
iii Telephone interviews were conducted among patients in France, the United Kingdom (UK), and the United States (U.S.), and among physicians in Australia and Canada.
iv 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.
v 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.
vi 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.
vii Physician results were not weighted in Finland due to the smaller sample size.
1 Loftus E. Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology. 2004; 126:1504–1517.
2 Hanauer SB. Inflammatory bowel disease. The New England Journal of Medicine. 1996; 334(13):841-8.
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.]