|NIH State-of-the-Science Panel Seeks to Dispel
Stigma Associated With Fecal and Urinary Incontinence
Open communication between patients and healthcare providers
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 firstname.lastname@example.org.
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
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.
Note to TV Editors:
The press conference at 2:00 p.m. on Wednesday, December 12, will
be broadcast live via satellite at the following coordinates:
G3R transponder 23
Orbital location: 95 degrees west
Downlink frequency: 3760H
Test Time: 1:30 - 2:00 p.m.
Broadcast: 2:00 - 3:00 p.m.
Note to Radio Editors:
An audio report of the conference results will be available after
4:00 p.m. Wednesday, December 12 by visiting http://www.nih.gov/news/radio/index.htm.
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This involves planning, managing, and coordinating the programs
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is available at http://www.nih.gov/icd/od/.
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