Welcome to Voices of UC

1,000 people with ulcerative colitis speak out.

In the summer of 2010, we asked 1,000 people living with ulcerative colitis (UC) to share the ways UC affects them. Voices of UC tells their story. A group of patients first shared their experiences through the original Voices of UC survey in 2005. We compared the latest results to the 2005 survey to see what has changed or improved in 5 years and what struggles remain for people living with UC.

In order to compare patient and physician opinions, we also asked 100 specialists who routinely treat UC patients (gastroenterologists) about their experiences. The findings of both surveys were compared to show where patient and doctor expectations align and where in some cases they may not match up.

Read on to find out what these UC patients and doctors said. Find out even more by clicking through to the following pages.

Some key survey findings

• Under control—or not?

  • Almost 4 out of 5 people living with UC say their disease was under control in the last 6 to12 months.

  • Patients also reported they had an average of 4.6 flare-ups in the past year—with flares lasting an average of 22 days each. That’s more than 101 days—well over 3 months a year.

• UC and daily life

  • More than 1 in 3 patients say UC limits their vacation plans, ability to date, or to do things with friends and family.

  • 3 out of 4 patients say UC impacts their emotional well-being

  • More than half say family and friends underestimate how much UC affects them.

• UC and work

  • More than 1 in 3 patients miss work due to UC symptoms. The average time lost: 9.5 days.

  • Almost half (46%) say they were less productive at work because of UC symptoms

  • More than 1 in 4 patients spend time and energy making sure their co-workers don’t know about their UC.

• Bridging the gap between patients and physicians

  • Nearly half of patients say they experience 3 or more UC flares per year, but doctors say less than a quarter of their patients have that many flares.

  • Almost all doctors would like their patients to use some kind of log or diary to track symptoms, and more than half said their patients do; but only 17% of patients say they actually use logs or diaries to track symptoms

• 2010 versus 2005

  • Patients first shared their experiences with UC in our 2005 Voices of UC survey. Here’s how things were then, and now:

    Some things are better:

    • 10% fewer patients are hospitalized for their UC (16% in 2010 instead of 26% in 2005) and the average length of stay is less in 2010 (about 10 days) than in 2005 (17 days)

    But some things haven’t changed:

    • One third of patients were diagnosed with another condition before receiving a UC diagnosis

    • Getting a UC diagnosis continues to take nearly a year and a half and an average of 3 different doctors

    • Similar to 2005, nearly 3 out of 4 UC patients say there is still a need for increased awareness of UC among the general public

About the Voices of UC surveys

Patient Survey: 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 were randomized to be included as part of the survey group. Only those who had ulcerative colitis were eligible to complete the telephone survey. Data was adjusted based on age and gender from a similar study conducted in 2005.

Physician survey: Survey respondents were identified through an opt-in panel of US physicians. To qualify for the online study, physicians were required to be gastroenterologists, postresidency between 2 and 30 years, see at least 10 UC patients per month, write at least 5 UC prescriptions and at least one biologic prescription per month, and not reside in Maine, Vermont, Massachusetts, Minnesota, or Washington, DC.

The 2010 Voices of UC surveys were conducted by Manhattan Research, on behalf of the Digestive Disease National Coalition (DDNC) and Janssen Biotech, Inc.