RSDSA Analyzes Results of Internet Survey

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.

http://rsds.org/3/pdf/Modified%20ASA%20poster-RSDSA.pdf