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According to results from the newest survey of Crohn’s patients, Voices of Crohn’s, 60% of the patients between the ages of 18 and 34 have been hospitalized within the last two years, and over half have required surgery within the past five years. Yet the majority of these patients still find that their employers, families, and friends tend to 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 the people living 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 insight into the debilitating nature of Crohn’s disease.
Generation Y
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Approximately 1 out of 6 Crohn’s patients surveyed who are part of Generation Y (ages 18 to 27), feels that Crohn’s limits their enrollment in higher education and ability to date, while also affecting their relationships with employers, friends, family members, and the general public.
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When asked how much friends are informed about their Crohn’s disease, 74% of the Generation Y patients surveyed said their friends know only what they tell them; only 20% would rank their friends as well-informed.
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Forty-five percent of Generation Y Crohn’s patients describe their physician’s ability to diagnose their Crohn’s disease as either extremely or very frustrating.
Families
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Overall, 93% of Crohn’s patients surveyed feel the disease has an impact on their overall emotional well-being.
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More than half of the Crohn’s patients surveyed find the inability to eat what they want to be one of the most limiting parts of the disease, while more than a third also find the inability to engage in physical activities and plan vacations or weekend trips as disease-limiting situations.
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People surveyed also reported feeling limited in the ability to have romantic relationships. Fifty-five percent of people surveyed say their disease has a significant impact on intimacy with their spouse or partner.
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More than half of the people surveyed feel their families are well-informed about Crohn’s, while others feel their families know only what they tell them about the disease.
The Workplace
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Sixty-two percent of Crohn’s patients feel their employers tend to underestimate the impact of Crohn’s disease.
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Seven out of ten patients accomplished less than they would have liked in their work/daily activities, and almost six out of ten experienced reduced time spent on work or other activities. Patients also reported having difficulty performing work or other activities and felt limited in the types of activities they could perform.
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Based on reporting from survey respondents, 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.
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This estimated impact on productivity takes into account the more than 500,000 people currently diagnosed with Crohn’s and the finding that 45% of those people surveyed missed an average 25.8 days of work.
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Close to half of Crohn’s patients have had to reduce their work schedule due to disease symptoms, and more than one third have had to take disability leave.
The Challenges of Treatment and Diagnosis of Crohn’s Disease
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On average, patients had to visit more than one physician before being diagnosed, with almost 30% having to visit five or more before their diagnosis.
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Nearly half of the people surveyed were diagnosed with another condition prior to being diagnosed with Crohn’s.
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Three out of four Crohn’s patients like to investigate all of their options to make informed decisions with their doctor.
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Patients surveyed waited an average of 38.5 months before getting a proper diagnosis.
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Approximately 50% of people surveyed were frustrated with their physician’s ability to diagnose them with Crohn’s disease.
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Upwards of half of the people surveyed say they are optimistic about future treatment options.
Bridging the Gap between Physicians and Patients
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Because there is no cure for Crohn’s disease and the perception among those surveyed is that awareness is limited among physicians, patients, families, friends, and co-workers, providing more information about the disease will encourage those with symptoms to speak to their physician about treatment. With physician care, support from family and friends, and the proper treatment, people with Crohn’s may be able to live more comfortable and fulfilling lives.
Educational Needs: Many Gaps Remain
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Eighty-four percent of people surveyed feel there is a need for increased awareness about Crohn’s disease among the general public.
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Seventy-five percent of people surveyed feel there is a need for increased awareness about Crohn’s disease among employers and physicians.
General Facts about Crohn’s Disease
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With an average of 38.3 days per year spent in the hospital, 69% of all patients with Crohn’s have been hospitalized in the past five years.
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Of symptoms associated with Crohn’s, 77% of people experienced stress, 73% experienced chronic pain, and 71% experienced chronic fatigue.
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Approximately 7 out of 10 people surveyed rated diarrhea as the most highly bothersome symptom of Crohn’s and experienced it 225.8 days per year on average.
Voices of Crohn’s is supported by Centocor, Inc.
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