Crohn's Disease Diagnosis Difficulties Increases Health Care Spending

Nearly half of patients required 10 or more office visits before receiving a Crohn's disease diagnosis.

Despite Crohn’s disease affecting approximately 780,000 people in the United States, a recent report revealed that obtaining a diagnosis can be difficult, resulting in numerous office visits and diagnostic tests.

To evaluate this issue, Health Union conducted a national survey of patients who suffer from Crohn’s disease. Forty-four percent of participants required 10 or more office visits before receiving a diagnosis and 59% saw 3 or more health care professionals (HCPs).

Although the exact cause for the disease is unknown, researchers believe it could have something to do with stimuli (bacteria or a virus) that causes the immune system to overreact and attack the healthy cells.

According to the survey, 45% of participants had a family member with an autoimmune disease that was not Crohn’s, while 42% had a family member diagnosed with an inflammatory bowel disease (IBD) such as Crohn’s or ulcerative colitis.

Typical symptoms of Crohn’s include abdominal pain, diarrhea, weight loss, and fever, as 22% of survey responders experienced their first symptoms before 15-years-old.

There were 78% of responders who stated Crohn’s disease affected their ability to work at least some of the time. Meanwhile, more than half said it often or always negatively impacted their overall quality of life.

"I wish people would become more educated about Crohn's Disease," said CrohnsDisease.com patient contributor Paul Richman. "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."

Since Crohn’s is an inflammatory disease, symptoms can show up outside of the digestive tract, affecting eyes, joints, liver, and skin.

Eighty-five percent of respondents had other complications in addition to gastrointestinal issues. This included: arthritis and swollen joints (60%), malnutrition and nutritional difficulties (37%), and anemia (36%).

Managing symptoms can be equally as difficult as diagnosing Crohn’s. Less than 3% of individuals were not experiencing symptoms, while those who were experienced an average of 7 symptoms, with fatigue and low energy being the most difficult to manage.

However, once patients were diagnosed, they actively pursued treatment, with over three-fourths of respondents reporting they were generally happy with the medical care they were receiving. For those who were unsatisfied, they were looking for more education, communication, and empathy.

"When it comes to Crohn's, health care providers can do a lot more than just provide treatment,” said President and Co-founder of Health Union, Tim Armand. “Openly discussing the unsavory aspects of this condition is really important as many patients feel they can't talk to their friends and family. This is why a site like CrohnsDisease.com is so important. It provides the open, non-judgmental support so necessary for management."