A nationwide survey of Crohn’s disease patients found a considerable delay in diagnosing the disease, with patients reporting multiple visits with healthcare professionals and numerous diagnostic tests before receiving a proper determination.
In fact, 44 percent of respondents to the survey — involving 2,018 people across the U.S. and conducted by Health Union from Oct. 29, 2015, to Jan. 10, 2016 — reported needing at least 10 medical visits to get a correct diagnosis, and 59 percent were seen by three or more healthcare professionals. Three out of every four of these Crohn’s patients also reported their disease was at a moderate to severe level by the time treatment began, the company reported in a press release.
The survey also found that patients would have liked more detailed disease information at diagnosis, and consequently were left uncertain as to their ability to perform certain tasks at work, to exercise, and even to engage in social activities. Overall, results showed that the medical community might not be sufficiently informed about the disease or understand its impact on patients’ lives.
Health Union is a provider of digital, social, and mobile platforms meant to create and engage patient communities. The company’s newest online community serves those with Crohn’s, a chronic and inflammatory disease of the digestive tract.
Although its precise cause is not certain, Crohn’s is believed to result from an autoimmune reaction triggered by bacteria or viruses. In the survey, interestingly, 45 percent of respondents said they had a family member with another autoimmune disease, and 42 percent reported having a family member with an inflammatory bowel disease (IBD), like Crohn’s or ulcerative colitis.
Further, 22.5 percent of respondents reported experiencing their first symptoms before the age of 15. A full 78 percent said that disease symptoms sometimes affected their work, and over 50 percent reported their overall quality of life being disrupted.
“I wish people would become more educated about Crohn’s Disease. If everyone was more well-read about Crohn’s, they would understand how it affects people’s lives in every way. They would realize how many people are affected by it, and how hard it is to keep friendships and relationships because of the embarrassing impact it has on our daily lives and routines,” Paul Richman, a Crohn’s patient, commented on Health Union’s community site, according to the release.
Eight-five percent of respondents also reported complications beyond those affecting the gastrointestinal tract, with the most frequent being arthritis/swollen joints (60 percent), malnutrition/difficulties in nutritional balance (37 percent), and anemia (36 percent).
The good news was that after receiving a diagnosis, patients were actively pursuing treatment and, on average, happy with their medical care. Eighty-seven percent started receiving treatment within one month of diagnosis, and 95 percent said they were continuing to receive professional medical care. Healthcare professionals were best at monitoring disease progression, showing knowledge and suggesting treatments, respondents said, but lacking in empathy and communication skills.
“When it comes to Crohn’s, health care providers can do a lot more than just provide treatment. Openly discussing the unsavory aspects of this condition is really important as many patients feel they can’t talk to their friends/family. This is why a site like CrohnsDisease.com is so important. It provides the open, non-judgmental support so necessary for management,” Tim Armand, Health Union’s president and co-founder, said in the release.
Primary triggers for Crohn’s flares were reported to be stress, greasy foods, and raw fruits and vegetables, and the frequency of flares was reported to be every few months. Finding the right treatment can be difficult for Crohn’s patients, the survey found. More than 50 percent of respondents were on their current treatment plan for less than two years, and nearly 70 percent said they might change it next year. The most common treatments reported were biologics, and 60 percent of patients surveyed expressed interest in entering a clinical trial.
Marisa Lauren-Troy, another Crohn’s community site contributor, said, “Inflammatory Bowel Disease is incredibly difficult to live with and not very well understood by the public. It does makes me feel good to know that some pharmaceutical companies and doctors are working hard for the first time ever to collaborate with patient advocates to improve quality of care for those suffering from this debilitating disease. This helps to mitigate some of the unique challenges faced by IBD patients.”
A chronic and inflammatory disease of the digestive tract, Crohn’s affects nearly 780,000 people in the United States. Symptoms typically include abdominal pain, diarrhea, weight loss, fever.
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