Nearly three out of four ulcerative colitis (UC) sufferers responding to a new nationwide survey say not feeling well has become a normal part of life. Furthermore, they describe UC as disruptive when it comes to their relationship with a spouse, their sexual relations and their emotional state.
UC patients "normalize" aspects of their experience to the point that they resign themselves to these burdens. The majority say that there is not much they can do beyond what they are already doing to feel better (70 percent) and they have learned to live with the disruptions that UC causes (83 percent).
"The findings sound an alarm because a diagnosis of UC shouldn't mean patients are settling for the level of burden reported in this survey for the next 50 or 60 years. UC is a manageable disease with the appropriate therapy," says David Rubin, M.D., a gastroenterologist and assistant professor of medicine at the University of Chicago Medical Center who helped design the surveys.
UC is a chronic autoimmune disease that causes inflammation in the intestine and can lead to symptoms such as severe abdominal pain and cramping, uncontrollable bloody diarrhea several times a day, fatigue and weight loss. It is typically first diagnosed in people between the ages of 15 to 30 and is estimated to affect nearly 700,000 Americans.
The objective of the surveys was to understand how UC affects patients' lives, including definitions of what's normal, the threshold for letting the disease disrupt life, and how patients manage their condition. The surveys, titled "UC: NORMAL (New Observations on Remission Management and Lifestyle)" were sponsored by Shire Pharmaceuticals, a specialty biopharmaceutical company which markets UC medications LIALDA™ and PENTASA® (mesalamines). Please see Important Safety Information included below.
UC patients generally report more stress/depression compared to other diseases.
The findings illustrate that UC takes a heavy psychological toll, which is further brought to light when comparing UC patient responses to the survey responses of people with three other chronic health conditions - migraines, rheumatoid arthritis (RA) and asthma, who were also surveyed as part of UC: NORMAL. Eighty-two percent of UC patients said their condition made life more stressful versus 75 percent of migraine patients, 69 percent of RA patients and 46 percent of asthma patients. Furthermore, 62 percent of UC patients reported feeling sometimes or always depressed about having their condition, versus 49 percent of migraine patients, 52 percent of RA patients and 25 percent of asthma patients.
More than four out of five people (84 percent) with UC say they worry about the long-term health effects of having UC, compared to 45 percent of migraine patients, 72 percent of RA patients and 58 percent of asthma patients. Specific worries most commonly mentioned by UC patients were developing colon cancer, having their colon removed, requiring surgery and public fecal incontinence.
The survey found that 32 percent of UC patients are not currently taking medication to treat their UC. For patients who are taking medications, compliance is an issue. Of those UC patients taking aminosalicylates (5-ASAs), the first-line therapy and most commonly prescribed class of medication for UC, only about half (54 percent) reported that they have taken all of their 5-ASA medications in the past seven days.
Past studies confirm compliance challenges and report that patients who are noncompliant with their prescribed UC medications have a five-fold greater risk of flare-ups than compliant patients. Traditionally, 5-ASA therapies required two to four times daily dosing and up to 6 to 16 pills a day.
"It's troubling that almost one-third of UC patients are not taking medication because the standard of care is that all patients with a diagnosis of UC should be on medication to maintain control of the condition and reduce the likelihood of relapse," says Dr. Rubin. "The other challenge we need to address is compliance. More convenient dosing regimens such as once-daily dosage formulations may be part of the solution."
Patients are also normalizing their experiences with flare-ups, a serious worsening of UC symptoms. UC patients reported an average of eight flare-ups per year. Four out of five (81 percent) of those surveyed say they consider the number of flare-ups they experience to be "normal" for their condition. On the other hand, in a survey of gastroenterologists also done as part of UC: NORMAL, physicians reported that a "typical" number of flare-ups per year on average is three among all patients (2 flare-ups if condition is mild; 4 if condition is moderate; 5 if condition is severe).
UC patients admit that they do not report all of their flare-ups to their physicians, making it difficult for physicians to understand the impact of UC on their patients' lives. One-third (34 percent) said they are sometimes reluctant to tell their doctor about flare-ups.
"If patients are experiencing multiple flare-ups a year, they should feel empowered to talk to their physicians openly about their disease and ask if their current therapy is appropriate for them," says Dr. Rubin. "As physicians, we need to ask questions to encourage patients to be forthcoming and open with us about the challenges they face and the concerns they have."
As a company committed to educating patients and working with physicians, Shire is developing a program that will launch this fall and is designed to help foster increased discussion between physicians and patients about UC and its management.
Further confounding the challenges for UC patients, their disease is relatively unknown among the general public. According to UC: NORMAL's survey of a cross section of the general public, 74 percent of Americans have either never heard of UC or have heard of it but know little about it, even though UC's prevalence approaches the numbers for HIV/AIDS and Parkinson's in the United States.
More than two-thirds of UC patients report that having UC is embarrassing to them (70 percent) and that they are reluctant to tell people about their condition (66 percent). With low public awareness and this hesitation to talk openly about their UC, feeling isolated is a risk for UC patients.
"This survey highlights the need to raise awareness and engage the public in a discussion about UC," says Richard Geswell, president, Crohn's and Colitis Foundation of America (CCFA). "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."
"Like many other chronic diseases, there's no medical cure for ulcerative colitis, but with better management of quality of life issues, improved patient communication and by getting patients on effective therapies, we can help patients live more normal, fulfilling and productive lives," concludes Dr. Rubin. "I hope the survey will spark a national dialogue about UC. I know I'll use it as a conversation starter in my practice."
The surveys were conducted by Richard Day Research and included a total of 1,975 people: 451 UC patients, 300 gastroenterologists, 309 RA patients, 305 asthma patients, 305 migraine patients and 305 adults from the general U.S. population who may have chronic health conditions. All patient surveys and the general public survey were fielded through an online panel that closely reflects the U.S. adult population overall. Physicians were recruited from a list of all board certified gastroenterologists in the U.S. Assuming no sample bias, the margin of error for the sample of 451 UC patients is ± 5 percent; assuming no sample bias, the margin of error for a sample of 300 (the other surveys) is ± 6 percent.