I see patients every day dealing with ulcerative colitis (UC). I also see how deeply it can impact a person’s life and affect each person differently. That’s why communication is so crucial. Good communication helps create a clear picture of what exactly is going on, so the right decisions can be made. And because no one knows better than you how UC is affecting you, it’s important to become your own best advocate.
Educate yourself. In my experience, people generally don’t feel they know enough about UC or the different prescription options currently available. They come to me not really knowing why UC affects them the way it does. As an IBD clinical nurse specialist, it’s part of my job to help people understand, but I can’t get them completely up to speed in the limited amount of time we have during an appointment.
I really encourage my patients to educate themselves as much as possible. I usually direct them to the Crohn’s and Colitis Foundation website. I’ve found it to be a reliable source of information. Once they have a better understanding, they’re able to ask better questions and make well-informed decisions.
Come prepared to ask questions. I also tell my patients that it’s really important to come to every appointment ready with a list of questions they’d like to discuss. That way, they can make sure their doctors and nurses are aware of the things they’re most concerned about.
My advice is often to tell people to study up. Make sure to come to appointments prepped and ready to have a productive discussion. I also talk to my patients about the importance of asking all of their questions. At the end of the day, you need to be the one to make sure that everything you wanted to talk about gets covered. So don’t leave the visit without those questions answered. That’s a major part of being your own best advocate.
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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 officeii 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 telephonei by Harris Poll on behalf of Pfizer between August 23 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)iii who practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,iv 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, years in practice, and physician 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.v UC Narrative physician sample survey may not necessarily 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.