Pfizer : Around the World, People Living with Ulcerative Colitis Share Common Perspectives and Experiences

Around the World, People Living with Ulcerative Colitis Share Common Perspectives and Experiences

New Global Survey Offers a Glimpse Into the Impacts of this Chronic Disease

May 18, 2018- A new global survey suggests that, around the world, people living with ulcerative colitis (UC) share remarkably similar and profound life impacts while living with the disease. UC, a type of inflammatory bowel disease (IBD) that can cause debilitating abdominal pain and bloody diarrhea, may impact people both physically and emotionally - leading people with the disease to adapt to a new reality where they may choose to alter their studies and/or careers, avoid relationships, and even delay or avoid starting a family.

In recognition of World IBD Day (May 19), Pfizer is sharing key findings from the global UC Narrative survey1,2conducted by Harris Poll, which gathered data from 10 countries and included 2,100 adults living with primarily moderate-to-severe UCiand 1,254 gastroenterologists (GIs). The survey explored several aspects of living with the disease ranging from physical symptoms to patient-physician communication to emotional health and intimacy.

Visit Pfizer.com/UCNarrative to learn more about the UC Narrative initiative, or scroll down to learn more about insights from the survey and ways people living with UC may be able to better navigate their disease management.

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.

Ulcerative Colitis: Inside and Out

Insights & Ideas for Empowering People Living with UC Across the Globe

As the global incidence of UC grows, so does the need for resources and support for those living with the disease. A 2017-2018 10-country survey of 2,100 adults living with primarily moderate-to-severe UC and 1,254 GIs revealed that UC may have short- and long-term impacts on everyday activities and life choices. The survey suggests that some people living with UC accept certain UC-related symptoms, like abdominal pain, as part of a new reality that they can't change.

We must challenge the notion that ulcerative colitis means that people must give up their life goals or things they enjoy. Certainly, the disease is life-changing, but the more that people living with UC, caregivers and healthcare providers examine the way they share information and talk about goals, the better chance people living with UC have to thrive.

-Luisa Avedano|CEO, European Federation of Crohn's and Colitis

Associations (EFCCA) and Global UC Narrative Advisory Panel Member

LIFE IMPACTS

LIFE, INTERRUPTED: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 felt like they spend more time in the bathroom than anywhere else. 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.1

The survey found that on their worst day, adults living with UC said they take, on average,10 trips to the bathroom (excluding trips to urinate), and on their best day,4 trips.1

Adults living with UC who reported their UC was in remission (67%; n=1415/2100), meaning that their disease is controlled with few to no symptoms,still reported using the bathroom quite often,especially on their worst day, as compared to those who said their UC was not in remission.1

A potential outcome of this level of disruption, both real and perceived, is that people living with UC may be giving up the things that are most important to them.

-Luisa Avedano|CEO, EFCCA and Global UC Narrative Advisory

Panel Member

Best day= 3

Best day= 4

Worst day= 9

Worst day= 12

EMOTIONAL HEALTH

Survey Findings

Community PerspectiveEmpowering Ideas

84%

(n=1769/2100)

of adults living with

UC strongly (42%; n=873/2100) or somewhat (43%; n=896/2100) agree that UC ismentally exhausting.1

"For me, the level of mental exhaustion expressed by patients is the most striking impact uncovered by the study. It's a difficult thing for most doctors to perceive or understand."

Nearly one-third

"We need to encourage our patients to tell us how they are feeling."

Use emojis or notes totrack how you are feelingon a daily basis - and make a point to share it with your healthcare team during your next appointment. If you notice that you are consistently feeling sad - seek out a mental health professional.

(30%; n=636/2100)

- Alessandro

of adults living with UC said theywished their GI better understoodhow UC affects their mental health- but 51% (n=645/1254) of GIs said they never discuss the impact of UC on their patients' mental/emotional health.1,2

Armuzzi, MDGastroenterologist Italy

RELATIONSHIPS

Survey Findings

Community PerspectiveEmpowering Ideas

32%of adults living with

(n=667/2100)

UC said that UC havingless impact on their sex life and personal relationshipswas important to them.1

55%

"I can relate to why people said it's so hard to talk about intimacy. When you don't feel good or feel good about yourself - it can really disrupt a relationship. But,having people who know what you are going through is actually a critical part of dealing with UC. Being open about UC can really free you."

(n=1154/2100)

of adults living with UC strongly (19%; n=404/2100) or somewhat (36%; n=750/2100) agreed that theydon't feel comfortable talking about their sex lives and personal relationshipswith their GI - and most GIs (96%; n= 1202/1254) didn't feel this is one of the top three topics important to prioritize during routine appointments.1,2

- Rasheed C.

Living with UC

for 10 Years

Canada

Many patient advocacy groups have developed"discussion guides" to help navigate difficult conversationswith romantic partners. Look for a local resource to help. In addition, talking to other people who have been through similar situations can give you ideas about what to say. Finally, if intimate relationships are being negatively impacted -speak with your GI or nurse. They want to help.

MISSED ACTIVITIES & EVENTS

Survey Findings

Community PerspectiveEmpowering Ideas

Surveyed adults living with UC estimated 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.1

"I was amazed that most people aren't actually missing more events; it definitely suggests how resilient so many UC patients are. However, in looking at many of the other findings around the impact of UC, I have to wonder if sometimes they arepushing themselves so they don't let down friends and family."

Develop asimple word or phraseto let your friends and family know when you'll need to cancel plans. You won't need to explain, and they'll know the situation.

Recognize that you aren't letting anyone downif you need to cancel last minute - and that if you aren't feeling well, you should focus on yourself.

- Ailsa Hart,

BA (Hons), BMBCh, FRCP, PhDGastroenterologist United Kingdom

LIFE JOURNEY IMPACTS

Community PerspectiveEmpowering Ideas

68%

(n=1436/2100)

of adults living with UC strongly (29%; n=615/2100) or somewhat (39%; n=822/2100) agree that they felt like they would be amore successfulperson if they did not have UC.1

"It's heartbreaking to know there are patients who are questioning their ability to be successful. I thinksome people may be settling for living a life that is less than what they deserve or can achieve."

Make sure you are familiar with your company's or school's policy on absences and disability due to illness so you know how to manage any paperwork before you need to take time off.

- Alexandra Sechi, RN

51%

IBD Nurse

Australia

(n=638/1254)

of surveyed GIs strongly (8%; n=95/1254) or somewhat (43%; n=543/1254) agreed their patientswould approach their school or career differentlyif they did not have UC.2

CONVERSATIONS ABOUT CARE

Gaps in communication and education resources identified by the survey showcase some reasons why it may be difficult for some adults living with UC to challenge aspects of their new reality.

46%(n=957/2100)

of adults living with UC strongly (17%; n=364/2100) or somewhat (28%; n=593/2100) agreed that theyworrythat if they ask too many questions, theirGI will see them as a difficult patientand it will affect the quality of care they receive.1

WITH YOUR GI:

Set goals

84%(n=1049/1254) of physcians strongly (24%; n=303/1254) or somewhat (60%; n=746/1254) agreedpatient advocacy organizations are important to the management of UC- however,48%(n=601/1254) of GIs said they recommend patient advocacy associations to fewer than half of their patients.2

Be honest

Ask more questions if you have themFind trusted sourcesBuild your support network

The UC Narrative survey gives us important new perspectives that build on previous research about the quality of life impacts of UC. One of these is the fact that it shows people living with UC that they are not alone. There are thousands of others having the same experiences, looking for resources and support. People living with UC must be empowered to speak up and encouraged to find help and hope!

-Luisa Avedano|CEO, EFCCA and Global UC Narrative Advisory Panel Member

About the UC Narrative

The UC Narrative is a global initiative created by Pfizer to engage the UC community to help identify how people living with ulcerative colitis are impacted by the disease.

The Global UC Narrative Advisory Panel,icomprised of people living with UC, as well as leading gastroenterologists, IBD nurses, a psychologist, and patient organizations, from 10 countries helped develop the survey methodology and questions. The Global UC Narrative Advisory Panel will work together to turn the insights gleaned from the survey into actions that can help address real-world needs and concerns about living with UC. Where permitted, some members of the Global UC Narrative Advisory Panel were paid honoraria for their participation. Pfizer provided travel and accommodation, as well as a modest compensation, to Advisory Panel members who represent patient advocacy organizations for time spent developing the survey and attending meetings to review the survey findings.

About the European Federation of Crohn's & Colitis Associations

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) is an umbrella organization representing 34 national patient associations. EFCCA aims to improve the quality of life for people with IBD and give them a louder voice and higher visibility across Europe and beyond.

About the Global UC Narrative Survey and Survey Methodology

The UC Narrative patient survey was conducted online and via telephoneiby 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,iihave 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.

The UC Narrative physician survey was conducted online and via telephoneiby Harris Poll on behalf of Pfizer between August 23 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)iIIwho practice as a gastroenterologist, internist with a gastroenterology focus, gastroenterology internist, or gastroenterology surgeon,ivdo 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. Physician results in the United States (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.

ivThe 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, 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. 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.

• iv. 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.

• 1. Data on file. Pfizer Inc, New York, NY. [UC Narrative Patient Survey. 2018.]

• 2. Data on file. Pfizer Inc, New York, NY. [UC Narrative Physician Survey. 2018.]

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