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Landmark Survey Shows Significant Impact of Irritable Bowel Syndrome on Lives of American Women
In the largest,
most comprehensive national survey ever on irritable bowel syndrome (IBS), which was conducted in July-August 1999, nearly
40 percent of women with IBS reported experiencing abdominal pain they described as intolerable without some kind of relief.
Moreover, regardless of the severity of their abdominal pain, most women in the survey said that their symptoms forced them
to miss days from work, limit travel or avoid social outings. Yet, on average, doctors who treat IBS rated the pain felt by
their typical IBS patient as being significantly less severe than patients reported.
Even further, a majority of
doctors said that while IBS may be distressing, it is not a serious medical condition. By contrast, the survey showed that
three out of ten women with IBS reported having been hospitalized for their abdominal symptoms at some point and their reported
rate of abdominal or intestinal surgery (other than cesarean section) is almost double that of non-sufferers.
These
are just some of the compelling findings from this landmark survey, IBS in American Women. The survey, which focused on women
as they represent about 70 percent of the IBS patient population, was comprised of in-depth telephone (random-digit dialing)
interviews with nearly 3,000 people -- including women with and without IBS, physicians, pharmacists and nurses.
IBS
is a chronic, sometimes debilitating condition marked by abdominal pain and irregular bowel function that may affect as many
as one in five American adults.
"This survey raises a larger issue in womens health, as it illustrates how
womens knowledge of their symptoms and bodies often differs dramatically from the knowledge and/or management by healthcare
practitioners," said Phyllis Greenberger, Executive Director, Society for Womens Health Research. What this survey also
brings out is that women with IBS may not know what to ask for, and their healthcare providers may not realize that their
patients need help.
Everyday Life a Constant Struggle
"IBS affects every aspect of my daily life,"
said IBS sufferer Lillian Figueroa, age 33. "I can not ride on a city bus or go to the park because there is no bathroom.
With the things that I can do, I constantly have to make allowances like leaving extra time in case I experience an episode."
Women with active IBS have three times as many sick days compared to women in the general public, miss work or
school twice as often, and almost one in four must allow extra time for their daily commute due to their abdominal symptoms.
This workplace impact is a real issue because nearly half of all sufferers surveyed were employed full-time. Moreover, two
out of three women with active IBS expressed concern about and are forced to plan their schedules around the location of restrooms.
Left to Manage Alone
Because the cause of IBS is poorly understood, it has often been mislabeled and
dismissed as something less than a real medical condition. This confusion appears to have resulted in frustration and a sense
of hopelessness among women suffering from IBS. More than one in four women with IBS said that their doctor does not understand
how much pain or discomfort they feel and that there is no point in consulting their doctor about their symptoms. In fact,
31 percent of women with IBS who have experienced continuous pain for over three months in the past year said they have not
seen their doctor in the last 12 months.
Physician and Patient Perceptions
IBS sufferers may be falling
through the cracks of the healthcare system, as some physicians surveyed who treat IBS still hold many misconceptions about
the condition. While nearly two-thirds of physicians believe IBS is primarily a physical condition, nearly a third of all
physicians surveyed believe IBS is primarily a psychological problem (33% of primary care physicians, 19% of GI specialists).
"IBS is a real, chronic medical condition with painful and potentially debilitating symptoms," said Lin
Chang, MD, co-director of the Neuroenteric Disease Program at the University of California at Los Angles Medical School. "Research
suggests that IBS stems from a physiologic abnormality, and is clearly not a psychosomatic disorder."
Women
with IBS report having seen an average of three physicians over a three-year period before they receive a clear-cut diagnosis.
Although published diagnostic guidelines do exist for IBS, almost 80 percent of physicians surveyed said they do not follow
them and less than a fifth said they are even somewhat familiar with current guidelines.
Physician and Patient
Education
All groups surveyed agreed that there is an overwhelming need for better management of IBS and more education.
Most women surveyed see physicians as a primary source for health information, yet almost all doctors (87%) admitted that
physicians needed better education about IBS. And, despite its prevalence, only one-third of women in the general public without
IBS have even heard of irritable bowel syndrome.
Technical advisors on this survey include: Lin Chang, MD, Co-Director,
UCLA/CURE Neuroenteric Disease Program; Phyllis Greenberger, MSW, Executive Director, Society for Womens Health Research;
Margaret Heitkemper, PhD, RN, FAAN, Director, Center for Womens Health Research, University of Washington; Nancy J. Norton,
President, International Foundation for Functional Gastrointestinal Disorders; and Georgia Witkin, PhD, Psychiatry Professor
and Director of the Stress Program, Mt. Sinai School of Medicine. This survey was conducted in July/August 1999 by Schulman,
Ronca and Bucuvalas, Inc., and funded by Glaxo Wellcome. Glaxo Wellcome is a leader in gastrointestinal research programs.
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