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Additional Insights from the "UC: NORMAL" Survey
"The survey's findings sound an alarm that we need to better manage quality-of-life issues, patient
communication and treatments so that patients can live more normal, fulfilling and productive lives."
- David Rubin, MD
Dr. Rubin helped design the "UC NORMAL" survey and is a gastroenterologist and assistant professor of medicine at the University of Chicago Hospitals.
Patients find UC to be quite disruptive to daily life
"Like many other chronic diseases, there's no medical cure
for ulcerative colitis, but there are effective therapies. Therefore, it's concerning that UC is having the negative impact on lives
to the degree reported in this survey."
- David Rubin, MD
Dr. Rubin helped design the "UC NORMAL" survey and is a gastroenterologist and assistant professor of medicine at the University of Chicago Hospitals.
For UC Patients, UC can be disruptive to many aspects of their daily lives.
56% said UC is "somewhat" disruptive to their lives, while 21% said UC is "very" disruptive.
- 82% said UC was disruptive to their emotional state
- 75% said UC was disruptive to sexual relations
- 64% said UC was disruptive to their relationship with a spouse
- 59% said UC was disruptive to their relationship with other family members and friends
93% said UC is "disruptive" during a flare-up; 53% said it is "very disruptive"
62% said UC makes it "difficult to lead a normal life"
61% said living with UC is a "daily struggle"
60% said UC has "wrecked important moments" in their lives
53% said UC "controls" them, rather than they control their UC
Patients tend to think their UC flare-ups are "normal" and believe remission means living with UC symptoms
Most UC patients surveyed have accepted flare-ups as "normal" and don't expect much from remission. Clinically, remission means being without symptoms for a period of time—remission can span months or even years; however, symptoms can eventually return.
74% believe it is "normal" to have flare-ups
58% believe remission means living with UC symptoms
UC patients and their doctors don't always see eye to eye
"As physicians, we need to probe more deeply into how our
patients are feeling and how the disease is impacting their lives, and we need to ask questions to encourage patients to be
forthcoming and open with us."
— David Rubin, MD
Most patients report having a good relationship with their doctor.
89% of patients believe their doctor "cares" about how UC affects their life
85% believe their doctor has "tailored treatments" to their personal "needs and preferences"
However, many feel that their physicians underestimate the impact of UC on their lives and how they are affected by UC.
50% believe their doctor is "more easily satisfied" than they are that their UC is under control
40% believe their doctor "underestimates how difficult it is to live with UC"
29% feel their condition is "more severe" than their doctor does
However, 34% of patients admit that they are sometimes reluctant to tell their doctor about flare-ups. Without complete information, it may be difficult for physicians to understand the impact of UC on patients' lives.
The public's awareness of UC is quite low
"This survey highlights the need to raise awareness and
engage the public in a discussion about UC. There's a scarcity of data relating to patient experience and opinions of UC and its
treatment, so I hope these findings will help bring this disease to the forefront and assist the ulcerative colitis community in
identifying areas to focus our efforts."
- Richard Geswell. President, Crohn's and Colitis Foundation of America (CCFA)
Even though UC's prevalence approaches the numbers for HIV/AIDS and Parkinson's disease in the United States, the survey showed that the public is relatively unaware of the condition.
UC patients' reluctance to discuss their condition could contribute to the low awareness of UC among the general public.
74% of the public say they have either never heard of UC or have heard of it but know little about it
34% of the public say that UC is "very disruptive" (compared to 55% of UC patients)
In contrast, the general public overestimates the level of disruption caused by migraines, asthma and RA, which are more well-known diseases.
Many UC patients don't take their medication the right way
A university study showed UC patients who do not take their medication as prescribed are at 5 times greater the risk of having a flare-up than UC patients who do take their medication as prescribed.
But the UC: Normal survey found that many UC patients aren't taking their medication the right way.
68% of patients surveyed reported taking prescription medication for their UC
85% of patients taking a UC medication admitted feeling somewhat inconvenienced by having to take their medications
16% said they are supposed to take medication but do not
48% of patients taking aminosalicylates (5-ASAs), the most commonly prescribed class of medication for UC, said they had not taken all of their 5-ASA medications in the past 7 days
89% said that they would be "interested in trying a once-daily medication"
Before Lialda, taking a 5-ASA for UC required 2 to 4 times daily dosing, up to 6 to 16 pills a day.
UC patients generally report more distress than people with some other chronic conditions
UC patients reported feeling more stress and worrying more about their health than people with asthma, rheumatoid arthritis (RA), and migraines.
84% of UC patients said they worry about the long-term health effects of having UC, compared to 45% of migraine patients, 72% of RA patients and 58% of asthma patients
82% of UC patients said their condition made life more stressful, versus 75% of migraine patients, 69% of RA patients and 46% of asthma patients
62% of UC patients reported feeling "sometimes" or "always" depressed about having their condition, versus 49% of migraine patients, 52% of RA patients and 25% of asthma patients
Specific worries most commonly mentioned by UC patients were developing colon cancer, having their colon removed, requiring surgery and experiencing public fecal incontinence.
Feeling isolated is also a risk for people with UC.
70% said that their UC is embarrassing to them
66% said that they are reluctant to tell people about their condition
Lialda has only been studied in UC, not in areas outside of UC including depression and stress. Patients should discuss these conditions with their healthcare providers.
Join the UC Patient Support Program
Ulcerative colitis is not an easy condition to deal with. But you don't have to face it alone. The UC Patient Support Program is here for people just like you. Learn more.
Web Resource Guide: Connecting with UC Patients
Lialda.com offers a list of online resources where you can learn more about UC, as well as a list of online communities where you can connect with other people with UC. Visit the Web Resource Guide.
View full UC: Normal Press
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Compliance and Success
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You should not take Lialda if you are allergic to salicylates (including mesalamine or aspirin) or to any of the ingredients of Lialda. Tell your doctor if you have a stomach blockage or are allergic to sulfasalazine. Mesalamine has been associated with a syndrome that may be difficult to distinguish from an ulcerative colitis flare-up. If you experience cramping, abdominal pain, bloody diarrhea, fever, headache or rash, talk to your doctor immediately. Some patients taking mesalamine have reported heart-related hypersensitivity reactions, such as inflammation of the heart muscle and inflammation of the lining of the heart. Tell your doctor if you have problems with your liver or kidneys. In worldwide clinical trials, Lialda was generally well tolerated. The most common adverse events were headache and flatulence. As with other medications, some serious side effects may occur. Less than 1% of patients experienced inflammation of the pancreas, which led to discontinuation of therapy with Lialda. Please see Lialda Full Prescribing Information Privacy Policy | Unsubscribe | For Health Care Professionals
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