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The IAS, through the adhesions.org web site and with
the collaboration of its members and visitors has conducted
groundbreaking research that has opened up new understandings
of adhesions, ARD and CAPPS from the perspective of
the patients. We thank all those who participated in
this important work.
IAS Research on Adhesions, Adhesions-Related
Disorder or CAPPS – a way to think about the problem from
the patient’s perspective.
From our survey of 687 U.S. we found that in reality,
the ARD patient is part of a much larger group of patients
who, in varying degrees, combinations and sequences
experience a range of symptoms and conditions including
endometriosis, interstitial cystitis (IC), irritable
bowel syndrome (IBS), bowel obstruction and chronic
abdominal and/or pelvic pain.
Although ‘‘adhesions’’ may
start out as a single, stand-alone entity, an adhesions
patient may develop a number of related conditions
(ARD) which renders those patients practically indistinguishable
from patients with multiple symptoms originating from
other abdominal or pelvic conditions. Knowing this,
it becomes obvious that an adhesions patient cannot
be treated merely by cutting the adhesions. Even if
we could assure that adhesions would not return, the
chronic nature of the patient’s disease means
that they will continue to suffer from pain and other
pelvic symptoms. Knowing that most or all of the patient’s
problems are interrelated, it becomes essential that
we treat the patient as a whole, and not merely as
a collection of individual body parts that can be “fixed” by
gynecologists, urologists, surgeons, gastroenterologists
etc. separately. Lest we fall into this trap, the International
Adhesions Society (IAS) advocates the use of the term “Complex
AbdominoPelvic and Pain Syndrome” (CAPPS) to
describe not only ARD, but to include related and overlapping
conditions such as Chronic Pelvic Pain, Interstitial
Cystitits, irritable Bowel Syndrome and Endometriosis.
In so doing we will more appropriately direct the patient
to integrated multidisciplinary diagnoses and treatments.
The paper also discusses some of our other findings
about what sort of factors dictate if and how an “adhesions” patient
may progress to a full blown CAPPS patient.
You can read
a copy of the press release related to
this work here as well as the full
research paper that was published after Dr. Wiseman was invited to submit
a manuscript for inclusion in a special volume of “Seminars
in Reproductive Medicine” on the subject of adhesions.
IAS Research on Adhesions and Informed Consent
570 IAS visitors, representing 952 procedures, completed
a survey conducted from 2002 to 2005 regarding
information given to patients prior to surgery
about adhesions.
The survey revealed that information about adhesions
was given to patients in 55% of adhesiolysis procedures,
but in only 9.3% of other abdominal or pelvic procedures.
In procedures not involving cutting of adhesions,
patients were told of adhesion barriers in only
6% of cases.
The full powerpoint presentation can be viewed
here.
A preliminary
version of this work was presented
at the PAX Congress in Amsterdam, April 12, 2003.
We thank
Dr. Lena Holmdahl and Bev Doucette (Patient
Coordinator at the time) for helping with the presentations.
IAS Research on Severe Adhesion Related Disorder
(ARD); Pattern of Bowel Dysfunction and Obstruction,
Social
and Physician Issues: an Internet Survey
466 IAS visitors completed a survey conducted between
2002 and 2005 regarding the pattern of bowel
dysfunction and obstruction, as well as other issues
related
to ARD. The survey found that the ARD patients
in the
survey had a bowel obstruction on average once
a year, with an average of 9 bowel obstructions.
81%
of the
ARD patients suffered from chronic pain and pain
medication often made their bowel problems worse.
42% of patients
were unable to work, and 43% of these could not
obtain benefits. 29% of those who tried physical
or massage
therapy reported a benefit.
The full powerpoint presentation can be viewed
here.
A preliminary version of this
work was presented
at the PAX Congress in Amsterdam, April 12,
2003. We thank
Dr. Lena Holmdahl and Bev Doucette (Patient
Coordinator at the time) for helping with the presentations.
IAS Research on ARD and Adhesion Related
Deaths
Analysis conducted in 2003 by the IAS of
US health statistics from 2001 has revealed
that
over 2200
people died with a diagnosis of intestinal
obstruction due
to adhesions. This number was consistent
for five consecutive years with between
2100 and
almost
2500 deaths per
annum. Women accounted for a 60% majority
of these deaths. In 2001 there were over
in-patient
67,000
discharges with a primary diagnosis of
adhesion-related obstruction,
with an average length of hospitalization
of 9.8 days. With an average charge of
some $32,000,
this
represents
a cost to the economy of $2.15 Billion.
When other inpatient diagnoses of peritoneal
and
pelvic adhesions
are added, the cost easily exceeds $5
billion, and that is before out-patient costs and
loss of work
are considered.
Read more by clicking
here. An update on these statistics
can be found in Dr.
Wiseman’s 2008 paper.
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