Date: April 20, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Featuring: Dr. Gary Curhan, Chief Clinical Nephrology, W. Roxbury VAMC: Harvard Med School
Topic: Epidemiology of IC! New Statistics for Women
Location: ICN Chat Central
<icnmgrjill> WELCOME TO THE IC SUPPORT GROUP MEETING FOR APRIL 20, 1999. WE HAVE A GUEST SPEAKER TONIGHT DR. GARY CURHAN BUT BEFORE WE BEGIN. I DO HAVE TO GIVE THE DISCLAIMER AND MAKE SOME ANNOUNCEMENTS I'M NOW TURNING THE MODERATION ON AS YOU HAVE QUESTIONS.. PLEASE SEND THEM TO MYSELF JULIE OR DIANE. AND WE WILL PASS THEM ALONG TO THE SPEAKER. AS ALWAYS .. YOU CAN WHISPER TO EACH OTHER AT ANYTIME DURING THE PRESENTATION
WELL... IT'S BEEN A VERY EVENTFUL TWO WEEKS FOR THE IC NETWORK AND MYSELF. WE JUST FINISHED A PRESS TOUR IN ENGLAND AND FOUND A WONDERFUL COMMUNITY OF IC PATIENTS AND CARE PROVIDERS IN THE UK. I'LL TELL YOU ALL MORE ABOUT IT AT THE END OF THE MEETING. THANK YOU ALL ALSO FOR YOUR NOTES OF CONDOLENCE. IT WAS HARD TO COME HOME TO THIS NEWS. YOUR THOUGHTS WERE VERY MUCH APPRECIATED.
IN TERMS OF ANNOUNCEMENTS, WE'LL BE ADDING SEVERAL NEW FEATURES IN THE NEXT FEW DAYS:
- NEW INFO FROM MEDTRONIC AND THE INTERSTIM
- NEW INFO FROM UROSURGE AND SANS PRODUCT LAUNCH
- NEW STUDIES ON L-ARGININE
- NEW EDITORIALS
- NEW PROCEDURES FOR PURCHASING MATERIALS.. I.E. CREDIT CARDS ARE NOW AVAILABLE.
I'LL STAY LATE TONIGHT AND SHARE WITH YOU THE UK EVENT IN DETAIL IF YOU'D LIKE NOW. ON TO TONIGHTS PRESENTATION. AS ALWAYS.. WE REMIND YOU THAT NO WEB SITE OR NO EMAIL MESSAGES... OR NO CHATS ONLINE CAN OR SHOULD SUBSTITUTE FOR FACE TO FACE MEDICAL CARE. ONLY YOUR PERSONAL PHYSICIAN CAN AND SHOULD GIVE YOU MEDICAL ADVICE. IF YOU HEAR SOMETHING INTERESTING DURING YOUR INTERNET JOURNIES, ALWAYS REVIEW THEM CAREFULLY, CHECK THE RESEARCH AND... MOST IMPORTANTLY... TALK THEM OVER WITH YOUR MEDICAL CARE PROVIDER.
<icnmgrjill> TONIGHT, WE HAVE DR. GARY CURHAN WHO IS ONE OF THE LEADING RESEARCHERS PURSUING EPIDEMIOLOGY STUDIES FOR IC. IN FEBRUARY 1999, THE JOURNAL OF UROLOGY PUBLISHED ONE OF HIS LATEST STUDIES THAT REVEALED NEW INSIGHT INTO THE TOTAL NUMBERS OF PATIENTS THAT HAVE IC AND, IT TURNS OUT, THE FIGURES ARE MUCH HIGHER THAN WE EXPECTED. HE IS HERE TONIGHT TO TALK ABOUT HIS RESEARCH, WHAT HE IS AWARE OF IN TERMS OF THE DEMOGRAPHICS OF IC, AS WELL AS HOW WE CAN LEARN AND SUPPORT MORE IC RESEARCH STUDIES. DR. CURHAN... WELCOME TO THE ICN!
<drcurhan> Thank you for inviting me to participate. As you know IC has not been studied as extensively as other medical conditions. In fact, our study was the first population based study of IC in the US. The previous studies were in select groups. We used two large prospective cohorts. The Nurses Health Study, involving more than 150,000 women in the US.
<icnmgrjill> THE PREVIOUS STUDIES WERE DONE IN FINLAND, RIGHT?
<drcurhan> There was a study done in the US by Dr. Held and colleagues but was not population based and was never published in a peer reviewed journal.
<icnmgrjill> CAN YOU SHARE WITH US YOUR BACKGROUND AND EXPERTISE.. AND WHERE YOU PRACTICE?
<drcurhan> I am a nephrologist (medical kidney specialist) and also have a doctorate in epidemiology. I practice and do my research in Boston.
<icnmgrjill> HOW DID YOU GET INTERESTED IN IC STUDIES?
<drcurhan> As part of our large cohort studies, we have the opportunity to study diseases that other smaller studies cannot address. I also work on other urologic diseases, such as kidney stones and learned about IC from my urology colleagues and also at the request of the NIH.
<icnmgrjill> ITS A COMPELLING DISEASE TO STUDY. ACCORDING TO THE JOURNAL ARTICLE, YOUR RESEARCH RESULTS DEMONSTRATED MUCH HIGHER POPULATION STATISTICS PREVIOUSLY IT WAS ASSUMED THAT ONLY 450,000 INDIVIDUALS IN THE US HAD IC. BUT YOURS HAVE NEW FIGURES. WILL YOU SHARE THEM WITH US??
<drcurhan> Our study found that the prevalence of IC, that is the number of women in our cohorts with a history of IC, was ~60 women/100,000 adult women. I did not calculate the estimated total number in the US. That was a figure that the ICA gave. I should note that our cohorts are not completely representative of the whole US population. The women are predominantly white and all have college degrees.
<icnmgrjill> YES.. THE ICA GAVE A FIGURE OF NEARLY 700,000 THOUSAND ADULT WOMEN IN THE USA MAY HAVE BEEN DIAGNOSED WITH IC.
<drcurhan> The previous number of 450,000 was the estimate from the Held study. Our study found that the prevalence was 50% higher so the new number is just 50% higher than the old number of 450,000.
<icnmgrjill> WHAT DO YOU FEEL IS THE SIGNIFICANCE OF THIS HIGHER FIGURE?
<drcurhan> The figures we found are likely to be much more accurate than the previous estimates for several reasons. First, we asked everyone in the cohort studies if they had IC. From women who said yes , we obtained medical records to confirm the diagnosis.
<icnmgrjill> DID YOU STUDY REVEAL ANY INTERESTING TRENDS IN THE AGE OF WOMEN WITH IC??
<drcurhan> There are two nurses health studies. THe older group of women are between the ages of 50 and 75 and the younger cohort is about 15 years younger. We found that the prevalence of IC was not related to age. Interestingly, the younger women had the same prevalence. This could be due to a higher incidence in younger women or that IC is being diagnosed more readily now.
<icnmgrjill> WE'VE DEFINITELY SEEN MORE YOUNGER WOMEN ON OUR WEBSITE. IN FACT, OUR YOUNGEST WOMAN (GIRL, i SHOULD SAY) IS ONLY FOUR YEARS OLD. WE ALSO HAVE TEENAGERS AND TWENTY SOMETHINGS PARTICIPATING AS WELL. ARE THEIR ANY STUDIES ON EPIDEMIOLOGY OF IC IN CHILDREN??
<drcurhan> We also noted that the time between the onset of symptoms to diagnosis has decreased. There are not any studies on the epidemiology of IC in children. One of the problems is that there are no large cohort studies of children but hopefully this will change shortly.
<icnmgrjill> MIDNIGHT HAS THE FIRST QUESTION. DID YOUR RESULTS DEMONSTRATE ANY CORRELATION WITH HORMONAL CHANGES?? MENOPAUSE, PERIMENOPAUSE, ETC. ETC...
<drcurhan> I should emphasize that this first study looked at prevalence which is the fraction of women who already have the disease. To begin to examine the risk factors for IC, we need to add a prospective component and look at new cases. We are in the process of doing this.
<icnmgrjill> JULIE HAS THE NEXT QUESTION! SHE WANTS TO KNOW IF YOUR STUDIES REVEALED THAT THE MAJORITY OF WOMEN WITH IC WERE CAUCASIAN?? WERE THEIR ANY CULTURAL DISTINCTIONS??
<drcurhan> We can't address this issue as we do not have sufficient number of noncaucasians in the study to answer that.
<icnmgrjill> THE NEXT QUESTION IS FROM HB. SHE WANTS TO KNOW IF YOUR STUDY PROVIDED ANY CORRELATIONS FOR THE CAUSES OF IC.. POSSIBLE CAUSES OF IC, INCLUDING MAYBE CHLORINATION OF WATER?? FLORIDATION?? ETC. ETC.
<drcurhan> Many of the women were diagnosed many years in the past. As you know, women with IC often change their habits after the onset of symptoms so it is difficult to pin down the causes after the diagnosis. We are identifying newly diagnosed women and will begin to look at specific risk factors. For now, no information is available from our study on risk factors.
<icnmgrjill> WE'RE VERY INTERESTED IN LEARNING MORE ABOUT THE CAUSES OF IC... SO THATS GOOD TO HEAR! AT THE ICN, WE ALSO WELCOME PATIENTS WITH OTHER CYSTITIS DISEASES, ESPECIALLY EOSINOPHILIC CYSTITIS. WE'D LIKE TO KNOW IF YOU'RE STUDYING OR IF ANYONE HAS STUDIED THE PREVALENCE OF THESE OTHER CYSTITIS CONDITIONS, AS WELL AS ANY INFORMATION YOU CAN OFFER US ON HOW WE CAN ENCOURAGE THOSE STUDIES TO OCCUR.
<drcurhan> AS you know, the most common type of cystitis is due to recurrent bacterial infections. This type of cystitis has been studied extensively. The other less common types have not been well-studied. There are numerous reasons including relative rarity, lack of broad appeal (everyone wants to cure cancer), and relative lack of funding.
<icnmgrjill> LETS SEE HERE! I'VE GOT TWO PEOPLE WITH THE EXACT SAME QUESTION. THEY'D LIKE TO KNOW IF YOUR STUDIES REVEALED ANY GEOGRAPHIC DISTINCTIONS, PARTS OF THE COUNTRY WHERE IC WAS MORE OR LESS PREVALENT??
<drcurhan> That is a very good question. The participants from our studies come from all over the US. However, there are not sufficient numbers of cases to come to any firm conclusions about geographic variation. Even though we had over 150,000 women in the study, there were only ~100 cases so it is hard to draw firm conclusions.
<icnmgrjill> HOW MANY WOMEN WOULD IT TAKE TO BEGIN TO DRAW CONCLUSIONS?? IDEALLY??
<drcurhan> IT would probably take close to 1000 cases. There is more to geography than just as risk factor. There is clearly geographic variation in the diagnosis and care of many medical conditions including IC. We would have to be certain that it is not just a diagtnosis issue before concluding that geography is important.
<icnmgrjill> BEV WOULD LIKE TO KNOW IF YOUR STUDY IDENTIFIED ANY SIGNIFICANT RISK FACTORS?
<drcurhan> Because of the design of the study, we cannot look at risk factors for the development of the disease. WE currently are identifying new cases so that we can begin to examine the role of a variety of dietary and nondietary risk factors.
<icnmgrjill> DIANE WOULD LIKE TO KNOW IF THERE IS ANY WAY THAT PATIENTS ONLINE CAN BECOME INVOLVED IN YOUR STUDIES??
<drcurhan> Our study is called a closed cohort study which means that only the subjects present from the beginning remain in the study. However, there are often other studies that are attempting to enroll patients with IC to study new treatments or to examine the natural history of the disease.
<icnmgrjill> LAST CALL FOR QUESTIONS! ANY ADDITIONAL QUESTIONS.. PLEASE PASS THEM ALONG FOR ME! DR. CURHAN... WE FEEL STRONGLY THAT, IF WE CAN HELP, WE'D LIKE TO HELP. ARE THEIR ANY OTHER WAYS THAT AN IC PATIENT CAN ASSIST IN YOUR WORK?? I.E. PLEADING FOR MONEY ALLOCATIONS THROUGH THE NIDDK.. ETC.?
<drcurhan> Pleading always helps but attracting new investigators will be very important. Money and scientific interest is what attracts investigators (hopefully not in that order). I think that to date the focus has been on the most severe cases. There are likely large numbers of women with mild IC who are not being diagnosed. This is the group that should also be included in future studies. We need better defintions of IC. This is being discussed at the NIDDK but has not been settled. Perhaps an international consensus conference is needed to work out again an acceptable working definition and to design an appropriate study to examine the natural history of women with mild symptoms.
<icnmgrjill> EXCELLENT POINT! WE ACTUALLY DISCUSSED THAT WHILE I WAS IN ENGLAND SO MANY DIFFERENT COUNTRIES HAVE DIFFERENT DEFINITIONS AND SOME DON'T RECOGNIZE IC AT ALL. IN ENGLAND, FOR EXAMPLE, WE USED THE TERM BLADDER SYNDROMES DURING MOST OF OUR PRESENTATIONS, RATHER THAN IC. EXCELLENT POINT.. AND WE MAY HAVE MORE ON THAT LATER! DR. CURHAN, THANK YOU SO MUCH FOR SPEAKING WITH US TONIGHT AND FOR SHARING WITH US YOUR KNOWLEDGE OF THE EPIDEMIOLOGY OF IC. I JUST HAVE ONE LAST QUESTION.. WHICH, APPROPRIATELY ENOUGH, IS FOR THE MEN WITH IC! ARE YOU AWARE OF ANY EPIDEMIOLOGICAL STUDIES WHICH ARE RESEARCHING THE PREVALENCE OF IC IN MEN.. HERE IN THE US OR ELSEWHERE??
<drcurhan> I am not aware of any current epidemiologic studies of IC in men. WE have several male cohorts but when I started working on this topic, it was supposedly much rarer in men. There are other conditions such as chronic prostatitis which have been lumped In with IC (probably inappropriately). I suspect that before a study is performed
<drcurhan> in men, a better defintion will have to be agreed upon....
<icnmgrjill> THAT'S WHAT WE THOUGHT.. DARN IT! WELL... THIS JUST GOES TO SHOW.. THAT WITH EVERY DAY.. NEW INSIGHT IS REVEALED BY IC RESEARCH AND NEW QUESTIONS ARE POSED.. WHICH NEED ANSWERS!
<icnmgrjill> THANK YOU DR. CURHAN FOR APPEARING WITH US TONIGHT.
<icnmgrjill> i'LL TAKE THE MODERATION OFF
<icnmgrjill> SO OUR AUDIENCE CAN GIVE YOU THE OVATION YOU DESERVE!
Referenced Websites:
Search Medline for Dr. Curhans latest research abstracts on epidemiology
IC Found to effect more than previously estimated
Review ICN Disclaimer
Special gratitude to Julie Halbur for coordinating this exceptional presentation.
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