NYTimes: Her Various Symptoms Seemed Unrelated. Then One Doctor Put It All Together.

Tom Benzoni benzonit at GMAIL.COM
Mon Feb 19 21:32:27 UTC 2018


Before you check this page, write down what you think is the incidence of
Schnitzler syndrome.
Then:
http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=10447&Disease_Disease_Search_diseaseGroup=schnitzler-syndrome&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Schnitzler-syndrome&title=Schnitzler-syndrome&search=Disease_Search_Simple
or search:
orphan net schnitzler

Is this really an entity on which we should form models or should we make a
system that sieves out common diseases using time?

tom benzoni

On Mon, Feb 19, 2018 at 2:50 PM, Ed Hoffer <ehoffer at gmail.com> wrote:

> In this case, creating a differential not likely to help because 99
> percent of doctors have never heard of this disease!
> Ed
>
> Sent from my iPhone
>
> On Feb 19, 2018, at 1:28 PM, Jason Maude <jason.maude at ISABELHEALTHCARE.COM>
> wrote:
>
> Isn’t the answer here to require a documented differential diagnosis?
>
>
>
> If the clinicians had to document a ddx wouldn’t this stop and make them
> think? The most important aim should not be to get them to use a decision
> support tool but to get them to stop and think. If they are forced to think
> that may generate doubt at which point they may then feel the need to
> consult a decision support tool. The real problem remains ‘the illusion of
> knowledge’.
>
>
>
> Regards
>
>
>
> Jason Maude
>
> Founder and CEO Isabel Healthcare
> Tel: +44 1428 644886 <+44%201428%20644886>
> Tel: +1 703 879 1890 <(703)%20879-1890>
> www.isabelhealthcare.com
>
>
>
>
>
> *From: *"Follansbee, William" <follansbeewp at UPMC.EDU>
> *Reply-To: *Society to Improve Diagnosis in Medicine <IMPROVEDX at LIST.
> IMPROVEDIAGNOSIS.ORG>, "Follansbee, William" <follansbeewp at UPMC.EDU>
> *Date: *Monday, 19 February 2018 at 18:07
> *To: *"IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG" <IMPROVEDX at LIST.
> IMPROVEDIAGNOSIS.ORG>
> *Subject: *Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
>
>
> Art,
>
>
>
> I agree with your thoughtful comments. I would also add, however, that for
> a disease like cellulitis, which I agree is frequently over diagnosed and
> treated unnecessarily, the answer is not going to be in decision support
> tools. Clinicians are just not going to consult them for such a common
> diagnosis. It is also to teach them how to be a little more thoughtful and
> analytic in their bedside decision making.   We teach trainees to use small
> groups of common sense but not uncommonly overlooked questions at
> appropriate times in the diagnostic process in a systematic fashion. In
> this context, one question we emphasize that they should ask themselves
> when considering a diagnosis is, “is there any discordant data?” Cellulitis
> is rarely bilateral yet many patients admitted and treated for apparent
> cellulitis have red and swollen legs bilaterally, ie discordant findings.
> If their illness script for cellulitis includes bilateral disease, then
> that is a knowledge problem that also has to be addressed.
>
>
>
> Best,
>
> Bill
>
>
>
>
>
> William P. Follansbee, M.D., FACC, FACP, FASNC
>
> The Master Clinician Professor of Cardiovascular Medicine
>
> Director, The UPMC Clinical Center for Medical Decision Making
>
> Suite A429 UPMC Presbyterian
>
> 200 Lothrop Street
> <https://maps.google.com/?q=200+Lothrop+Street%0D+Pittsburgh,+PA+15213&entry=gmail&source=g>
>
> Pittsburgh, PA 15213
> <https://maps.google.com/?q=200+Lothrop+Street%0D+Pittsburgh,+PA+15213&entry=gmail&source=g>
>
> Phone: 412-647-3437 <(412)%20647-3437>
>
> Fax: 412-647-3873 <(412)%20647-3873>
>
> Email: follansbeewp at upmc.edu
>
>
>
> [image: cid:image001.png at 01D1AF95.1368ACB0]
>
>
>
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>
> *From:* Art Papier [mailto:apapier at VISUALDX.COM <apapier at VISUALDX.COM>]
> *Sent:* Monday, February 19, 2018 11:17 AM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
>
>
> Likewise VisualDx had Schnitzler’s at the top of the differential, but as
> much as I agree that all physicians need to understand and use point of
> care diagnostic decision support, we should recognize that relatively rare
> diseases like Schnitzler are uncommon and relatively easy for decision
> support to “pick up”.   The real need is to handle the cases when
> clinicians do not know they need help, but do need help.  How do you know
> what you don’t know?  Uncommon diseases are uncommon, and therefore
> variants of common are much more common that rare diseases.   Our real
> challenge in decision support is to provide tools that also provide useful
> and valuable content around the common, and more particularly with the
> variants of the common so clinicians have decision support top of mind.
> 80-20 rule:  If 80% of diagnoses are common, then it is reasonable to
> assume that variants of the 80% dwarf the super rare diseases in number.
> It is also safe to assume that clinicians who are in a constant rush, and
> bogged down by mind-numbing EHR charting exercises, will question the
> efficiency of using these tools.  We are focused on variation in disease
> presentation in our work with the goal of expanding the use of decision
> support beyond use for seemingly rare presentations.  We belive that the
> memory based training and care delivery system creates self-fulfilling
> prophecies where clinicians ask questions around the “classic presentation
> disease” scripts they memorize, but do not know the questions to ask around
> the related variants.  As an example,  over 100,000 people are admitted to
> hospitals each year for cellulitis when they do not have cellulitits.  This
> is a boring “story” for decision because cellulitis is common, but there is
> so much harm happening just from error around this single diagnosis.  How
> do we bend this curve and reduce unnecessary admissions while recognizing
> all true positives?   By focusing on commn diseases and their variants we
> can expand the use of decision support.
>
>
>
> Thanks to Lisa for another wonderfully written great case and prompting
> discussion at SIDM !
>
> Art
>
>
>
> Art Papier MD
>
> CEO VisualDx
>
> Associate Professor of Dermatology and Medical Informatics
>
> University of Rochester
>
> *From:* Edward Hoffer [mailto:ehoffer at GMAIL.COM <ehoffer at GMAIL.COM>]
> *Sent:* Sunday, February 18, 2018 6:40 PM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
>
>
> This story makes a very good case for the use of computer-based diagnostic
> decision support systems. I entered the findings into the one with which I
> work, DXplain, and Schnitzler's came in ranked #1 I did not try Isabel, but
> would not be surprised if it also had the correct diagnosis near the top.
> Much easier than spending the reported "hours" in PubMed that the hero
> expended to arrive at the correct diagnosis.
>
> Ed
>
> Edward P Hoffer MD, FACC, FACP
>
>
>
> On Sun, Feb 18, 2018 at 9:16 AM, Joe Graedon <jgraedon at gmail.com> wrote:
>
> https://www.nytimes.com/2018/02/14/magazine/her-various-
> symptoms-seemed-unrelated-then-one-doctor-put-it-all-
> together.html?smprod=nytcore-ipad&smid=nytcore-ipad-share
>
> Chills, sweats, hives, achey bones — the older woman was sick for years
> before someone figured out the unusual disease that ailed her.
>
>
> Sent from my iPad
>
>
>
>
>
> Moderator: David Meyers, Board Member, Society to Improve Diagnosis in
> Medicine
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> Medicine
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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