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RSDSA Analyzes Results of Internet Survey
By Jim Broatch
In early January, RSDSA Board members and staff met with
Srinivasa Raja, MD and Shefali Agarwal, MPH, to discuss the
Web-based Epidemiological Survey of Complex Regional Pain
Syndrome (CRPS). The survey, conducted by Johns Hopkins School
of Medicine and funded by RSDSA, was hosted on RSDSA's website
for six months. A total of 1,829 individuals started the survey
and 1,362 completed it. The survey results revealed how devastating
and intractable CRPS can become.
Some of the findings include:
- respondents were overwhelmingly female (84%)
- mean duration of disease was between 40 and 58 months
- average pain score reported was 7.9 (based on a rating
scale of 1 to 10, 10 being the worst imaginable pain) with
35% reporting a pain score of 10!
- 94% reported that their pain affected their sleep
- 47% reported thoughts of ending their life and 15% had
acted on the impulse (an average of 2 times)
- 62% of the respondents rated their general health as poor
to fair
- 60% reported being disabled
- 41% had suffered a work-related injury
- 16% reported being employed full time; 6% reported being
employed part time
The four predominant precipitating events cited were
- surgery (30%)
- fracture (15%)
- sprain (11%)
- crush injury (10%)
CRPS was first diagnosed by
- an orthopaedic surgeon (32%)
- a pain specialist (19%)
- a neurologist (15%)
- a physical therapist (4%)
Significantly, CRPS was rarely diagnosed by a general practitioner
(3%) or family practitioner (2%).
Currently, we are evaluating ways to present the information
to the survey participants, and the medical, legal, governmental,
and insurance communities. The research team, led by Dr. Raja,
has presented an
abstract of the data at the 2005 annual meeting of the
American Society of Anesthesiology. Also, we hope to publish
the data in a peer-reviewed journal for primary care physicians;
only 5% of the participants had their CRPS diagnosed by these
practitioners. A shocking statistic - almost 30 percent developed
CRPS after surgery - raises a number of questions. How do
we best communicate the risk that CRPS is a potential side
effect of certain surgeries?
A lot of relevant information was added by the survey respondents
in the areas of treatment cost, experiences with workers'
compensation companies, and how individuals with CRPS were
treated by emergency medicine practitioners. The survey data
is a treasure trove of information that we will use to bring
greater attention to this devastating syndrome that should
be a major public health concern.
I would like to thank our members who participated in the
survey and we'll keep you informed of our progress.
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