ride to conquer crps 2008 ©parc 2008. “i couldn’t believe that a disease that i’d never heard...
TRANSCRIPT
“I couldn’t believe that a disease that I’d never heard of
could do so much damage.”
Harry FL Pollett, MD FRCPC, Director Pain Clinic, Northside General Hospital, N Sydney, NS
PARC’S MISSION
TO SUPPORT, EDUCATE AND INFORM PERSONS LIVING WITH CRPS/RSD, THEIR FAMILIES, FRIENDS, THE COMMUNITY, AND THE MEDICAL PROFESSIONALS TREATING CRPS/RSD ABOUT THE UTMOST IMPORTANCE OF EARLY DIAGNOSIS AND TREATMENT.
WHAT IS COMPLEX REGIONAL PAIN SYNDROME (CRPS)?
painful neurological syndrome rated higher than cancer pain (McGill Pain Index)
1 in 60 have lifetime risk poorly understood, under-recognized syndrome,
probable cause is nerve damage in C fibers (Oaklander MD PhD 2006)
early diagnosis is key, often diagnosed too late due to lack of medical education
patients often left with intractable pain
WORTHY CAUSE
BRING greater awareness of disabling syndrome, earlier recognition through doctor education, health care professionals and community
THE EARLIER THE DIAGNOSIS, the greater the chance for a cure
SUPPORT research for better treatments and a cure, McGill University, Montreal
WHY CRPS?
chronic pain touches all Canadians (1 in 3) no single successful treatment, needs to be
caught early (30% diagnosed in 0-3 mo.) desperately needed research for better
treatments and a cure better awareness of chronic pain syndromes
(66% see 3 or more doctors before diagnosis)
WHY CYCLE?
2nd most popular sport in North America solo cyclist in spotlight will bring importance
and awareness to all Canadians
WHY Mc GILL UNIVERSITY?
Canadian CRPS research lab at Mc Gill distinguished senior research chair Dr Gary
Bennett PhD, leading scientist in neuropathic pain and CRPS research
Mc Gill internationally known for excellent pain research
research will benefit all Canadians
RIDE DETAILS: SOLO CYCLIST
David L Shulman MD,CCFP,FCFP,DAAPM, Rothbart Pain Clinic, Toronto, Ontario
treats chronic pain/CRPS specialist passionate about pain education for doctors,
patient advocacy avid cyclist dedicating time away from busy
practice for this worthy cause
ITINERARY
START DATE: July 19 PLACE: Marathon, Ontario (Canada’s centre) STOP: CRPS research lab, McGill, Montreal STOP: N Sydney NS: CRPS clinic END: St. John’s NL Estimated time: 3 weeks
CRITICAL SUCCESS FACTORS
Dr. Shulman’s Summer 2007 RIDE from BC to Marathon, Ontario
Dr Bennett, PhD, McGill: lab tour, highlights CRPS research
Dr Pollett, MD FRCPC : clinic tour, highlights CRPS treatment options
Track daily progress through PARC’s web site and Dr Shulman’s donor page
SPONSOR BENEFITS
use your brand in fundraising event reinforce brand recognition long term daily exposure of brand for 21 days
through Ontario, Quebec, New Brunswick. Nova Scotia, and Newfoundland
PROCEEDS OF RIDE
to PARC’S educational programs for 2008-9 to educate doctors and public
to support ongoing research at McGill University into better treatments and a cure for CRPS.
RIDE TO CONQUER CRPS
Brand new endeavour FIRST KNOWN DOCTOR-CYCLIST FOR
CRPS to travel in Canada Speaks to importance of cause (see RSD
CANADA Survey to follow)
RSD CANADA SURVEY 2004-6
“Facts do not cease to exist because they are ignored”.
Aldous Huxley 1894-1963
RSD CANADA SURVEY
CRPS: Complex Regional Pain Syndrome aka RSD (Reflex Sympathetic Dystrophy, old name))
First Canadian survey online January 1, 2004-6 Huge gap of knowledge about CRPS/RSD in the
medical community Approximately 300 respondents Astonishing results
RSDCANADA SURVEY RESULTS
Onset of CRPS to diagnosis No. of doctors seen before diagnosis Self-reported pain levels of CRPS patients Rating own success
EARLY DIAGNOSIS CRITICAL
Early diagnosis ( <3 mo.) for best prognosis If left untreated, can lead to lifetime of
intractable, chronic pain 0-3 mo. HIGHEST recovery rate WITH
treatment 3-6 months after onset: 80-90% recovery rate SURVEY results are much different
ONSET OF CRPS TO DIAGNOSIS
0-3 mo. =29.24% 3-6 mo. =19.27% 6 mo-1yr.= 10.96% 1yr-2yr =10.63% 2 yr-3yr=6.64% 3-5 yr = 3.31% 5 yr-20 yr = 3.65% unknown = 14.28%
only 30% diagnosed early when success rate highest
1 in 2 (48.51%) diagnosed in < 6 mo.
3 out of 5 diagnosed within 1 year (59.47%)
1 in 2 or nearly 50% are not diagnosed early
1 in 4 (26.25%) are diagnosed after one year
ONSET OF CRPS TO DIAGNOSIS
0.00%
5.00%
10.00%
15.00%
< 1 MO 1 MO 2 MO 3 MO 4 MO5 MO 6 MO 7 MO 8 MO 9 MO10 MO 11 MO 1YR-2YR 2-3 YR 3-5 YR5 YR plus UNKNOWN
NO. OF DOCTORS PRIOR TO DIAGNOSIS
1 doctor = 19.03% 2 doctors = 14.88% 3 doctors = 12.8 % 4 doctors = 14.53% 5 doctors = 13.84% 6 doctors = 8.65% 7 doctors = 0.69% 8 doctors - 0.35% 9 doctors = 2.42% 10 plus doctors = 8.3%
1 in 5 see one doctor 1 in 3 saw 2 or less
doctors (33.91%) 2 in 3 patients saw 3 or
more doctors (66.08%) 4 out of 5 see more than
one doctor WHY SEE MORE THAN
ONE DOCTOR?
NO. OF DOCTORS SEEN PRIOR TO DIAGNOSIS OF CRPS
0.00%
5.00%
10.00%
15.00%
20.00%
1 2 3 4 5 6 7 8 9 10+ DK
19.03%
14.88%
12.80%
14.53%
13.84%
8.65%
0.69%
0.35%
2.42%
8.30%
4.50%
OVERALL PAIN RATING
no one responded with 0 or 1 rating 1 in 4 rate pain as a 10 0-3 mild pain = 5.46% 4-6 moderate pain = 22.82% 7-10 severe pain = 70%
PAIN RATING SCALE 0-10
0.00%
5.00%
10.00%
15.00%
20.00%
25.00%
mild moderate severe
0
1
2
3
4
5
6
7
8
9
10
DK
OVERALL SUCCESS RATING
approx. 1 in 3 rated success as 25% or less about 2 in 3 rated success as 50% or less
(POOR) 1 in 6 rated success as FAIR - GOOD (50-75%) 1 in 7 didn’t rate success, (likely would inflate
very poor or poor numbers) 1 in 20 rated overall success as VERY GOOD -
EXCELLENT (75-100%)
OVERALL SUCCESS RATING(%)
0.00%5.00%
10.00%15.00%20.00%25.00%30.00%35.00%40.00%
very
poor
poor
fair
good/e
x. NR
responses(%)
34%
29.79%
17.63%
5.17%
NR
WHAT IS THE CURRENT STATUS OF YOUR CRPS?
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
WORSE
BETTER
SAME
Unknown
SURVEY CONCLUSIONS
MUST EDUCATE medical profession about early recognition of symptoms and PROPER diagnosis
MUST RECOGNIZE PAIN: pain is grossly under-treated; pain education
Low success ratings show lack of effective treatments for CRPS
CONCLUSIONS
When not caught early, CRPS is difficult to treat
Make doctors aware of diagnostic criteria, early recognition
More research to find better treatments is desperately needed
P.A.R.C.PO BOX 21026St. Catharines,Ontario CanadaL2M 7X2RSD HELP LINE: Mon-Thurs.After 7 PMOFFICE Tel: 905 934 0261Web: www.rsdcanada.org E-mail: [email protected] is a registered charity.
“RSD IS NOT A WALK IN THE P.A.R.C.”