According to results released today from the newest survey of people with Crohn's disease, "Voices of Crohn's," 60 percent of people with Crohn's, between the ages of 18 and 34, have been hospitalized within the last two years and more than half have required surgery within the past five years. Nevertheless, more than half of people surveyed still find that their employers, families and friends underestimate the effect of the disease on their daily lives.
The survey, conducted by Manhattan Research on behalf of the Crohn's & Colitis Foundation of America (CCFA) and the Digestive Disease National Coalition (DDNC) and sponsored by Centocor, Inc., also revealed how the symptoms of Crohn's, including unpredictable and persistent diarrhea, fever and severe abdominal pain, impact the physical, social and emotional well- being of people with the disease. A sub-analysis of those surveyed focused specifically on the adult segment of Generation Y (ages 18 to 27), as well as family relationships and workplace issues and provides new and comprehensive insight into the debilitating nature of Crohn's disease.
Challenges of Diagnosis Many of the people surveyed with Crohn's reported that it took more than three years to obtain proper diagnosis and that they had to visit more than one physician - and in some cases more than five physicians - to get properly diagnosed. Nearly half of the people surveyed also reported getting misdiagnosed and treated for other conditions prior to being diagnosed with Crohn's disease.
"After visiting the doctor and undergoing several blood tests and a colonoscopy, I was misdiagnosed with ulcerative colitis. I yearned for a treatment that would help me because my symptoms were taking an intense toll on my daily life, and the normal activities that I once enjoyed were restricted because of pain and discomfort," said Kimberly Morgan-Waugh, R.N., and Crohn's patient. "Now that I received an accurate diagnosis and proper treatment, I am able to take care of my son and have reclaimed my active lifestyle that was put on hold because of my pain and constant need to be near a bathroom."
If diagnosed early and accurately and treated appropriately, many people with Crohn's can effectively manage their symptoms.
Findings Reveal Major Impact in Workplace Based on the survey of people with Crohn's, it is estimated that the impact of lost productivity for employers due to Crohn's disease could be as high as $1.3 billion per year. The estimated impact on productivity takes into account the more than 500,000 people with Crohn's and the finding that 45 percent of those people missed on average 25.8 days of work per year.
"While most employers are usually made aware of an employee's Crohn's disease, it is imperative for them to learn how the employee has to manage their needs in the workplace," said Rodger L. De Rose, President and CEO, CCFA. "If people with Crohn's can educate their employer and the other people in their lives about the nature of the disease, it will allow them to function more naturally, despite their symptoms."
Findings Reveal Major Impact on the Adult Segment of Generation Y Survey results among the adult segment of Generation Y, a generation contemplating relationships and choices for the future, found that Crohn's disease had an impact on virtually all aspects of their lives. In fact, approximately 1 out of 5 respondents in the adult segment of Generation Y not only reported that Crohn's affects their relationships with employers, friends, family members, and the general public, but also limited their desire to date and confidence to pursue higher education.
"People with Crohn's in the adult segment of Generation Y need to be able share the aspects of their disease with friends, families and employers so the people in their lives are knowledgeable and can deal with potential Crohn's- related health situations," said Jim Romano, Director of Advocacy, DDNC. "Only about 20 percent of those surveyed felt that their friends were well-informed about the disease."
Findings Reveal Major Impact on Families The highly bothersome and often debilitating symptoms of Crohn's disease not only impact the person, but can also be disruptive to family and spousal relationships. Over 93 percent of people with Crohn's report the disease has an impact on their overall emotional well-being, with more than half of all people surveyed feeling as though they needed help with routine needs due to the effects of the disease.
"Crohn's can limit a person's ability to eat what they want, engage in physical activities, plan vacations, and weekend trips, and lower their desire for professional growth," said Gary Lichtenstein, MD, Director, Center of Inflammatory Bowel Disease, University of Pennsylvania School of Medicine. "Families can be most supportive if they become educated about the symptoms and impact of the disease. With a well-informed family, someone with Crohn's can experience a better quality of life."
Report Methodologies The "Voices of Crohn's" survey findings were determined through research conducted with 1,000 Crohn's patients. The population was wholly examined and further sub-segmented into the following age groups: 18 to 34 years of age, 35 to 54 years of age and 55+ years of age. The margin of error was +/-3.1 percent at the 95 percent confidence interval.
About Crohn's Disease Crohn's disease is a chronic illness that causes inflammation of the gastrointestinal tract, typically resulting in symptoms such as diarrhea, fever, abdominal pain and weight loss. Although it can involve any area of the gastrointestinal tract from the mouth to the anus, it most commonly affects the small intestine and/or colon. More than 500,000 Americans suffer from this gastrointestinal disorder that typically begins in late childhood or early adulthood.