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May 19 is World IBD Day, observed on five continents and in more than 50 countries, each led by a leading national patient organization (the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is the lead organizer). IBD stands for Inflammatory Bowel Disease and is a day to raise awareness and support for people living with Crohn’s disease and ulcerative colitis worldwide.
In conjunction with World IBD Day, CareNet surveyed 100 physicians in the field of gastroenterology (including some gastroenterological surgeons and pediatrics), asking them about the problems faced by IBD patients. The results revealed the following points.
・The most common response to “What IBD (ulcerative colitis and Crohn’s disease) patients find troubling” was “intractable (repeated relapses and remissions, not completely cured, continued use of medication).”
・Satisfaction with IBD (Ulcerative Colitis, Crohn’s Disease) Treatment, 43% of respondents were “Somewhat satisfied” and “Very satisfied” for Ulcerative Colitis, while only 30% were satisfied for “Crohn’s Disease.”
・The Level of awareness and understanding of IBD among people around the patient was 60% for “Not well known” and “Not at all known” combined.
・These results suggest that the social awareness of IBD is still insufficient to understand the disease.
For detailed results on each item, please see below.
First, when asked to choose the most common problems faced by IBD (ulcerative colitis and Crohn’s disease) patients, the most common response (54%) was “intractable (repeated relapses and remissions, not completely cured, continued use of medication).”
This was followed by “toilet (bowel movements and diarrhea) problems (frequent and uncontrollable)” (46%), “always having to live with the toilet in mind” (43%), and “life events (obstacles and anxiety about marriage, pregnancy, childbirth, etc.)” (38%).
Furthermore, of these, when asked “what seems to bother their patients the most,” about 30% of all physicians responded that the most troubling thing for IBD patients is “intractable (repeated relapses and remissions, not completely cured, continued use of medication ).”
When asked to rate their satisfaction with IBD (ulcerative colitis and Crohn’s disease) treatment on a seven-point scale from a physician’s standpoint, 43% of the respondents answered “somewhat satisfied” and “very satisfied” for ulcerative colitis, while only 30% responded “satisfied” for the same item for Crohn’s disease.
In the following question, “Symptoms that are the most difficult to feel the effects of treatment in IBD treatment,” the most common response was “abdominal symptoms (especially abdominal pain, abdominal discomfort, and abdominal tenderness)” (38%), which can be inferred to have led to the low level of treatment satisfaction among doctors, as symptoms directly suffered by patients with IBD are more easily manifested.
Finally, when asked about the level of social recognition of IBD, about half (52%) of the physicians answered that the name of the disease was “well known” or “fairly well known.”
On the other hand, however, in the “degree of awareness and understanding of the disease by those around the patient,” a total of 60% of the respondents felt that the disease was “not well known” or “unknown.”
This suggests that the social awareness of IBD, as perceived by physicians, is still insufficient to reach a level of understanding of the disease.
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