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NIH State-of-the-Science Panel Seeks to Dispel Stigma Associated With Fecal and Urinary Incontinence

December 13, 2007

An independent panel convened this week by the NIH found that fewer than half of individuals experiencing fecal or urinary incontinence - the inability to control bowel movements or urination, respectively - report their symptoms to healthcare providers without being prompted. The secrecy and distress surrounding these issues erode the quality of life for millions, and hamper scientific understanding and development of prevention and treatment strategies.

"It's time to remove the stigma associated with urinary and fecal incontinence," said C. Seth Landefeld, M.D., Director of the Center on Aging at the University of California San Francisco and chair of the conference panel. "More than one-fourth of Americans will experience incontinence at some point in their lives. We as a society need to get over our discomfort with this subject so that incontinence sufferers receive the compassion, acceptance, and care they need, and our aging population can take steps to prevent incontinence in the future."

Removing the stigma was a key message of an NIH state-of-the-science conference, which concluded this morning. The panel's full draft statement will be available later today at http://consensus.nih.gov. The statement includes recommendations for research studies to fill the major gaps in current knowledge that severely limit our ability to help people with these conditions.

The panel concluded that healthcare providers are well positioned to initiate discussions with patients about incontinence. The panel recommended further studies to determine when and how to approach patients on the topic. Although further study will be needed to find the most effective wording for asking patients about symptoms, the panel recommended that the ideal approach will address four aspects of the patient's experience: frequency, volume, the degree to which symptoms bother the patient, and the patient's desire for treatment.

Provider education alone will be insufficient to improve detection, prevention, and treatment. Public policy changes, including appropriate reimbursement, regulation, and management are also needed. Raising public awareness is a priority. To help reduce the stigma associated with these conditions, the panel had the following messages for those experiencing incontinence:

* You are not alone
* Some medical conditions can cause incontinence and can be treated
* Incontinence does not need to be a part of aging
* Lifestyle changes and behavioral interventions can prevent incontinence in many cases
* You should tell your healthcare provider

Though fecal and urinary incontinence can affect men and women at all life stages, both conditions disproportionately affect women, especially those who have given birth, as pelvic muscle injury during childbirth and routine episiotomy are associated with a higher rate of fecal incontinence. For this reason, the panel recommended that episiotomy not be routinely performed during childbirth. As baby boomers approach their sixties, the impact of these already common conditions will only increase.

The 15-member conference panel included experts in the fields of geriatrics, nursing, gastroenterology, obstetrics and gynecology, internal medicine, urology, general surgery, oncology, neurosurgery, epidemiology, biostatistics, psychiatry, rehabilitation medicine, environmental health sciences, and healthcare financing, as well as a public representative. A listing of the panel members and their institutional affiliations is included in the draft conference statement. Interviews with panel members can be arranged by contacting Kelli Marciel at 301-496-4819 or marcielk@od.nih.gov.

The conference was sponsored by the NIH Office of Medical Applications of Research (OMAR) and the National Institute of Diabetes and Digestive and Kidney Diseases, along with other components of the NIH. This conference was conducted under the NIH Consensus Development Program, which provides a mechanism for assessing the available scientific evidence and developing objective statements on issues of medical controversy.

In addition to the material presented at the conference by speakers and the comments and concerns of conference participants presented during discussion periods, the panel considered pertinent research from the published literature and the results of a systematic review of the literature commissioned by OMAR. The systematic review was prepared through the Agency for Healthcare Research and Quality (AHRQ) Evidence-based Practice Centers (EPC) program, by the Minnesota Evidence-based Practice Center. The EPCs develop evidence reports and technology assessments based on rigorous, comprehensive syntheses and analyses of the scientific literature, emphasizing explicit and detailed documentation of methods, rationale, and assumptions. The evidence report on Prevention of Fecal and Urinary Incontinence in Adults is available at http://www.ahrq.gov/downloads/pub/evidence/pdf/fuiad/fuiad.pdf.

The panel's statement is an independent report and is not a policy statement of the NIH or the federal government. The NIH Consensus Development Program, of which this conference is a part, was established in 1977 as a mechanism to judge controversial topics in medicine and public health in an unbiased, impartial manner. NIH has conducted 118 consensus development conferences, and 28 state-of-the-science (formerly "technology assessment") conferences, addressing a wide range of issues. A backgrounder on the NIH Consensus Development Program process is available at http://consensus.nih.gov/forthemedia.htm.

The National Institutes of Health (NIH)