This new 2013 Behcet's research is interesting because it assigns point values to symptoms which make up the clinical diagnostic criteria. A patient scoring =4 points is classified as having BD (I'm sure this would be after excluding other diseases which could cause these symptoms).
Notice that there's about 5% possibility of error even with patients rated at 4 points or more. However, some of these patients may be in an earlier stage of the disease and go on to finally develop complete Behcet's. Still your doctor may diagnose you with "possible Behcet's" or "probable Behcet's" and treat you accordingly, especially if you show other signs of the disease such as arthritis or GI problems.
"The International Criteria for Behçet's Disease (ICBD): a collaborative study of 27 countries on the sensitivity and specificity of the new criteria." J Eur Acad Dermatol Venereol. 2013 Feb 26. doi: 10.1111/jdv.12107. [Epub ahead of print]
Many of the doctors involved in this study are familiar in the Behcet's literature. However, neither Hasan nor Yusuf Yazici is cited. Only two American physicians participated (Drs. K.T. Calamia and J.E. Crook of the Jacksonville Mayo Clinic), but no Brits or Aussie/Canadian/NZ were on this International Team.
Here's the abstract:
Behçet's disease (BD) is a chronic, relapsing, inflammatory vascular disease with no pathognomonic test. Low sensitivity of the currently applied International Study Group (ISG) clinical diagnostic criteria led to their reassessment.
An International Team for the Revision of the International Criteria for BD (from 27 countries) submitted data from 2556 clinically diagnosed BD patients and 1163 controls with BD-mimicking diseases or presenting at least one major BD sign. These were randomly divided into training and validation sets. Logistic regression, ‘leave-one-country-out’ cross-validation and clinical judgment were employed to develop new International Criteria for BD (ICBD) with the training data. Existing and new criteria were tested for their performance in the validation set.
For the ICBD, ocular lesions, oral aphthosis (ulcers) and genital aphthosis (ulcers) are each assigned 2 points, while skin lesions, central nervous system involvement and vascular manifestations 1 point each. The pathergy test, when used, was assigned 1 point. A patient scoring =4 points is classified as having BD. In the training set, 93.9% sensitivity and 92.1% specificity were assessed compared with 81.2% sensitivity and 95.9% specificity for the ISG criteria. In the validation set, ICBD demonstrated an unbiased estimate of sensitivity of 94.8% (95% CI: 93.4–95.9%), considerably higher than that of the ISG criteria (85.0%). Specificity (90.5%, 95% CI: 87.9–92.8%) was lower than that of the ISG-criteria (96.0%), yet still reasonably high. For countries with at least 90%-of-cases and controls having a pathergy test, adding 1 point for pathergy test increased the estimate of sensitivity from 95.5% to 98.5%, while barely reducing specificity from 92.1% to 91.6%.
The new proposed criteria derived from multinational data exhibits much improved sensitivity over the ISG criteria while maintaining reasonable specificity. It is proposed that the ICBD criteria to be adopted both as a guide for diagnosis and classification of BD.
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amietamant
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Sounds very interesting. Once doctors know how to use it properly it might save a lot of people going through all the dramas we all have had to get a diagnosis.
I noticed that when posting this info, the mathematic "greater than or equal to" sign turned into just an equal sign, such as points = 4. The original article specifies the criteria to be = or > (greater than) 4 points.
I'm grateful that I didn't go through any drama to get the first tentative diagnosis only one year after early symptoms (multiple bouts of oral ulcers, then two outbreaks of genital ulcers, fatigue, and testing negative for other diseases). Six months after that first "Behcet's?" was noted in my medical record, I developed arthritis w/swelling in my left knee and some small joints, along with nonspecific GI problems, which seemed to strengthen the diagnosis to "probable Behcet's." A couple years later I had two mild bouts of retinal vasculitis which sealed the complete diagnosis.
That doesn't mean that a few doctors over the past 26 years haven't questioned the diagnosis, especially when I was taking meds that worked well at first. But after I spent 10 days as an inpatient in the National Institutes of Health's Behcet's Study (Washington, D.C.) in 2011, my complete diagnosis was confirmed again and I dare any future doctors to question it. Taking photos of all visible symptoms has helped as well.
This all sounds very interesting and informative ! In your oppinion, do you think this new system will be accepted well over the old one ? It would certainly be more useful to new people diagnosed with BD or awaiting a diagnosis in favour over the old very complicated almost hap hazard list of symptoms and timings a lot of us went through.
I have read a couple of your blogs/replies now and find myself continually amazed at your comprehensive knowledge and experience of BD......you're an absolute fountain of knowledge !LOL
Do you mind me asking if you are medically trained/qualified and have you published any of your observations that I can read ? I read on your blog here that you spent over 10 years in a program in the states and I'm sure a run down of that experience and all its ups and downs would make good reading. Did you ever write anything on this please ? I would love to read it if you have.
I understand you are a fellow sufferer but from what I have read you seem to have a much higher level of personal involvement in the 'Ins and Outs' of BD and can hold your own with the meds teams which makes me ask about any medical qualifications you have. I am particulalrly interested in studying with the Open Unversity and wonder if you could give me any pointers to any courses that I might find useful to further my knowledge of BD ? I have a masters degree in the installation and development of IT systems for my career choice but now I am retired due to BD I am looking for a subject of interest to me to perhaps pursue and lead to another similar qualification and BD seems an obvious choice of subject having been a confirmed BD case for over 12 years now myself. Can you give me any pointers or suggestion please ?
I would be very grateful for any help and suggestions you can give me and the titles of any papers I can read to set me down the right path, particularly anything you have written yourself.
You misread my post: I spent 10 DAYS (not years) as a hospital inpatient in NIH's Behcet's Natural History Study (Washington D.C. / Bethesda) where I was evaluated by a team of doctors and tested almost to death. It was fascinating and of course, I was confirmed as having complete Behcet's Disease. You can Google the study to learn more about it.
I have gained knowledge about Behcet's through 25 years of study, reading, attending international conferences, writing, speaking/teaching, research, editing/reviewing Behcet's books, and interaction with hundreds of other patients and Behcet's specialists. It's been helpful that I have an advanced health degree so I can understand everything, but beyond that I'm mostly self-taught.
I have also represented Behcet's organizations at medical conferences worldwide and occasionally correspond directly with top BD researchers to clarify their conclusions. In 2010, I spoke at the Behcet's Patient Conference in London about the dangers of fungal infections for patients taking biologics (anti-TNF a drugs like Enbrel, Remicade, Humira, Cimzia, etc.). I also attended the ICBD physician presentations and talked with specialists at their gatherings. In 2014, I will be attending the ICBD international conference in Paris.
Before my Behcet's advanced to include neuro symptoms, I worked for a rheumatology nonprofit organization educating physicians, allied health professionals, and patients about arthritis, lupus, fibromyalgia, and disability issues. Prior to that I was a Naval Intelligence Officer, but was medically retired for Behcet's Disease.
Of course, since I have Behcet's myself and am on full disability, I'm in no position to answer everyone's personal questions or do research for them. (I only have so many spoons in a day too.) Much of the information is already out there and available by searching Google (including Google Scholar, Google Books, Google Images) and PubMed.
My best advice is to sort your search results by most recent because information is always changing and built upon previous research findings. Also, when searching, make sure to include alternative terms (e.g. aphthous, lesions, cutaneous, vasculitis, synovitis, cognitive, pulmonary etc.) to bring up articles that may use these words instead of more common ones.
If you're interested, you can read years of my posts by joining the Yahoo behcet-support online group and doing a search for what I've written (search for Lisa). I saw that there are over 2,500 posts with my name. I only started posting a few things with this group recently because there is so much need out there.
However, I encourage patients to Google their questions/topics, as well as do searches on the online support groups, before posting open or specific questions because almost everything has already been said or answered before. I understand that reading the research is difficult for non-medical people and that many terms are unfamiliar. But since we'll likely deal with this rare disease for many years, or a lifetime, it's worth becoming informed about our condition, medications, tests, and new research findings.
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