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Impact Report
Preface

Women’s health research has emerged from its early emphasis on reproduction to address a much more complex array of women’s health issues. We now understand how sex plays a major role in the underlying causes and effects of heart disease, musculoskeletal disorders, and metabolic/digestive disorders. Among the latter, irritable bowel syndrome (IBS) is one of the least understood and most frustrating—for patients as well as for the medical community.

Approximately 60% to 75% of Americans with IBS are women. Despite research to date, scientists are still unable to explain the predominance of IBS in women. Since the National Institutes of Health mandated that women be included in clinical trials in 1990, differences in the way disease states manifest in men and women have been noted. Sex differences in reproductive hormones, pain perception, stress response, and gastrointestinal function may partially explain a woman’s increased susceptibility to IBS. Despite these findings, definitive evidence explaining the true reasons why IBS affects women more often than men remains elusive. In addition to these findings, cultural differences in health-care–seeking behaviors and differences in reporting habits and symptom-response profiles between the sexes also have been observed. A closer examination of the differences in presentation of IBS in women and men is clearly warranted. This report attempts to capture the unmet needs of women with IBS.

Experts now understand that IBS has a complex biologic basis with a physiologic cause, yet most Americans still do not recognize IBS as a common medical disorder. This lack of awareness was confirmed in a telephone survey of 1,000 adults conducted in May 2002 (see the Appendix for a brief overview of the methodology). Participants were asked to rank 5 conditions (asthma, coronary heart disease, depression, diabetes, and IBS) in order of their prevalence. Although IBS affects approximately 1 in 6 Americans, only 1.2% of respondents correctly identified IBS as the most prevalent of these 5 conditions.

Although the consequences of IBS for patients may not always be obvious to health care providers or the general public, its impact on people living with the symptoms of abdominal pain or discomfort, bloating, and constipation or diarrhea, is all too real. There is a growing body of medical literature that describes the many ways IBS can significantly reduce a person’s quality of life, causing as much distress as do conditions such as asthma and migraine headaches.

Discomfort from the symptoms of IBS may be intolerable for many patients, yet few medical treatments provide adequate relief for the multiple symptoms of this troubling disorder. Instead, IBS remains underrecognized, and diagnosis can be elusive as patients shuffle from physician to physician in search of relief from these often debilitating symptoms. These patients struggle with pain, isolation, and frustration. Physicians and other health care providers (eg, physician assistants, nurse practitioners, nurses) themselves often struggle to identify the disorder and, once they do so, they have a limited array of treatment options from which to choose.

A disturbing picture emerges of IBS patients who must plan their days around their access to a bathroom. They often miss social events, work or school. They also visit physicians more frequently than do healthy individuals. The societal toll mounts dramatically—the condition costs the United States health care system as much as $30 billion annually in direct and indirect costs.1,2

This report offers a timely and compelling look at the significant impact of IBS symptoms on patient’s lives; unmet needs of IBS patients; the urgency to help remove the communication barriers between physicians and patients with a common language to describe IBS and its symptoms; and the need for greater public understanding of the heavy burden IBS places on women.

Foreword
Preface
Introduction
Patient and Physician Surveys
The Physical Impact of IBS
IBS and Quality of Life
The Economic Impact of IBS
The Challenges of Diagnosis and Treatment
Bridging the Gap Between Patients and Physicians: A Prerequisite for Progress
Educational Needs: Many Gaps
Conclusion
Appendix
References
Adivsory Panel
About the Society for Women’s Health Research
Board of Directors
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