Voices of UC — Key Findings

According to the newest survey of people living with ulcerative colitis (UC), Voices of UC, nearly 40% of respondents experienced symptoms at least 180 days per year. Yet people living with UC still feel that the impact of the disease is underestimated by families, friends, and employers. The survey was conducted by telephone with more than 1,000 patients with UC.

The survey, conducted by Manhattan Research on behalf of the Crohn’s & Colitis Foundation of America (CCFA) and sponsored by Centocor, Inc., also revealed that the symptoms of UC — including severe abdominal cramping and pain, the sudden, uncontrollable urge for bowel movements, and fatigue — impact the physical, social, and emotional well-being of those living with the disease. A subanalysis of the survey focused specifically on how UC affects the social, familial, and professional aspects of people’s lives.

Impact on social life

More than 60% of respondents stated that their friends’ understanding of UC was limited to what they told them; 10% reported that their friends knew absolutely nothing about UC, and only 1% felt that their friends were experts on the disease.
55% of those surveyed reported avoiding social engagements due to symptoms, while 37% found that their UC made it difficult to make and keep social engagements with friends.
51% reported that stress about their social life has a medium or high impact on their UC symptoms.
Nearly half of respondents reported that the disease was most limiting in the following social situations: eating what they want, engaging in certain physical activities, and planning vacations and weekend trips.

Impact on family life

Approximately half of people surveyed said that their families were well-informed about UC, while only 5% would categorize their family members as experts.
Among those with children living at home, close to 70% of those surveyed reported the disease had an impact on their relationship with their children.
74% of people surveyed reported that they have experienced less sleep than desired, 41% have avoided intimate situations with a spouse or partner, and 24% have had trouble maintaining a relationship with a spouse or partner due to UC.
31% of people surveyed reported that they turn to their families as a resource when actively seeking information about UC.

Impact on work life

Based on reporting from survey respondents, it is estimated that the loss of productivity due to UC may cost employers more than $431 million per year.

The estimated impact on productivity takes into account the more than 500,000 people currently diagnosed with UC and the finding that approximately 22% of those people missed an average of 16.8 days of work per year.

Of those surveyed between the ages of 18 and 34, 40% feel that UC limits their ability to plan their work schedule, 30% have avoided taking a job or promotion as a direct result of the disease, and 25% reported that their disease is very or extremely limiting to their work life.
One in four of the people surveyed between the ages of 18 and 34 said that their employer was not aware of their disease. One in four patients surveyed also reported hiding their disease from their fellow employees, and one in five reported hiding their disease from employers.

The challenges in the diagnosis of UC

73% of people with UC surveyed visited two or more doctors before receiving a definitive UC diagnosis, and more than 30% had to wait more than one year. On average, patients visited 3.2 physicians and waited 18.3 months for a diagnosis; 47% visited at least three physicians, and 17% visited five or more.

Bridging the gap between patients and physicians

Half of all the survey respondents believe that physicians tend to underestimate the impact of UC on their patients.
72% of people with UC surveyed believe that there is a need for increased awareness of UC among physicians.
71% of people with UC surveyed who actively seek information about their disease get the information from their physician.

Educational needs: Many gaps remain

Half of the survey respondents believe that their friends, family, and employers underestimate the impact of UC.
76% of survey respondents reported that there is a need for increased awareness of UC among the general public.

General findings about UC

47% of those surveyed reported that they have been hospitalized for an average of 22 days in the past five years; 37% have been to the emergency room.
In the past five years, 20% of respondents underwent an average of 2.3 surgeries. 37% of surgeries consisted of removing the entire colon.

Survey respondents were identified through an opt-in database of U.S. consumers who requested health information based on their condition profile; people within this list, who had UC, were randomized to be included as part of the survey group. The population was wholly examined and further sub-segmented into the following age groups: 18-34 years of age, 35 to 54 years of age and 55+ years of age.