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Voices of UC Survey Shows Need for Patients with Ulcerative Colitis to Speak Up about Debilitating Digestive Disease
Date:10/8/2010

HORSHAM, Pa., Oct. 8 /PRNewswire/ -- People living with ulcerative colitis (UC) say greater understanding is needed about the life-altering nature of this chronic inflammatory bowel disease that affects approximately 500,000 Americans.  Data released today from Voices of UC (voicesofuc.com), an initiative developed to educate and raise awareness of the condition, captures the dual perspectives of people who live with the condition and the physicians who treat it.  These new survey findings illustrate the physical and emotional toll of the disease, as well as a disconnect in the way patients and physicians discuss and manage the condition.

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The Voices of UC survey was conducted by Manhattan Research and is a collaborative effort between Centocor Ortho Biotech Inc. and the Digestive Disease National Coalition (DDNC), a non-profit advocacy organization comprised of the major national voluntary and professional societies concerned with the many diseases of the digestive tract. The 2010 Voices of UC initiative is a follow-up to a 2005 survey to look at what has changed and what struggles remain for people living with UC.  While 10 percent fewer patients were hospitalized with UC-related issues in 2010, some aspects of living with UC have not changed. In fact, a full one-third of patients still get an incorrect diagnosis before a doctor correctly identifies their condition as UC, and getting the right diagnosis continues to take well over a year.

Actor and program spokesperson James Van Der Beek, formerly of the television programs "Dawson's Creek" and "Mercy," has witnessed firsthand the effect UC can have on a loved one. "My mother initially kept her UC diagnosis a secret from most of our family because she was embarrassed and felt uncomfortable talking about it," said Van Der Beek.  "Through my involvement in the Voices of UC program, I hope to raise awareness of UC and encourage those who suffer in silence, like my mom, to speak up about their condition with their families and friends, who may provide support, and most important, their physicians."

In addition to being uncomfortable discussing their condition with friends and family, patients may not be fully communicating the effect of the disease to their physicians.  In fact, nearly half of patients surveyed experience three or more UC flares each year in contrast to physicians who believe less than a quarter do.  

"While the symptoms of UC may be challenging for patients to talk about, it's critical that they share these details with their physician to get a timely and accurate diagnosis and make sure their condition is treated appropriately," said James DeGerome, MD, president of the DDNC.  "The results of the Voices of UC surveys illustrate the importance of active and open communication, especially between a person with UC and their physician."

The surveys also suggest that patients believe their UC is under control when it may not be.

  • Nearly four out of five patients living with UC believe that their disease is under control.
  • These same patients report having symptoms of UC for an average of 101 days out of the year – almost one day out of every three days.  

In addition to reporting on the physical consequences of the disease, patients also expressed how UC affects them emotionally and personally in social, work and family settings.

  • One in three patients report the threat of UC flares makes it difficult to plan weekend trips or vacations.
  • One in three patients say having UC makes it hard to date or be in a relationship and keep plans with family and friends.
  • More than 25 percent of patients spend time or energy hiding their UC from co-workers and more than one-third miss days at work as a result of their UC.
  • Forty-two percent of patients report feeling depressed within the previous 30 days because of their condition, while nearly half say having UC causes them stress.

Visit www.VoicesofUC.com for more survey results, tips on discussing and overcoming the challenges of UC, and more on James Van Der Beek's story. For more information about the Digestive Disease National Coalition, visit: www.ddnc.org.

The views and opinions shared in Voices of UC are those of the participants and are not necessarily representative of the views and opinions of Centocor Ortho Biotech Inc.  James Van Der Beek was compensated for his time in preparing for and participating in activities related to the Voices of UC.  

About Ulcerative Colitis (UC)

UC, a chronic inflammatory bowel disease affecting nearly 500,000 people in the U.S., is marked by the inflammation and ulceration of the colonic mucosa, or innermost lining, which may lead to bloody stools, severe diarrhea and frequent abdominal pain. Tiny open sores, or ulcers, form on the surface of the lining where they bleed and produce pus and mucus. Symptoms of the disease may lead to loss of appetite, subsequent weight loss, and fatigue. UC is a chronic disease, and there is no cure. Although progress has been made in IBD research, investigators do not know what causes this disease.

About the 2010 Voices of UC surveys

One-thousand patient 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 telephone survey group. Only those who had UC were eligible to complete the survey. Data was adjusted based on age and gender from a similar study conducted in 2005.

One-hundred physician survey respondents were identified through an opt-in panel of U.S. physicians. To qualify for the online study, physicians were required to be gastroenterologists, post-residency between 2 and 30 years, see at least 10 UC patients a month, write at least five UC prescriptions and at least one biologic prescription a month, and not reside in Maine, Vermont, Massachusetts, Minnesota or Washington, DC.

About Centocor Ortho Biotech, Inc.

Centocor Ortho Biotech Inc. redefines the standard of care in immunology, nephrology and oncology.  Built upon a pioneering history, Centocor Ortho Biotech Inc. harnesses innovations in large-molecule and small-molecule research to create important new therapeutic options.  Beyond its innovative medicines, Centocor Ortho Biotech Inc. is at the forefront of developing education and public policy initiatives to ensure patients and their families, caregivers, advocates and healthcare professionals have access to the latest treatment information, support services and quality care.  For more information about Centocor Ortho Biotech Inc., visit www.CentocorOrthoBiotech.com.


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SOURCE Centocor Ortho Biotech, Inc.
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