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  • 1.  Seeking patient voices

    Posted 02-24-2022 17:55
    I, along Michael Bruno and others, am on a panel established by the American College of Emergency Physicians to develop quality measures for the diagnosis of ruptured abdominal aortic aneurysm (rAAA). The effort is funded by a generous grant from the Gordon and Betty Moore Foundation. We held our first organizational meeting this week and discussed how we will proceed. One of our top priorities is to engage with patients or family members who have had experience with rAAA and have them on our work group. 

    In addition, ACEP is working on another such effort, funded by the John Ritter Foundation, to develop quality measures for  aortic dissection (AD). The Ritter Foundation came about after John Ritter, a well known and loved TV star, died of AD nearly 20 years ago. Patient involvement in that panel is also desired.

    Anyone with interest or experience with these diseases who would be interested in participating in ACEP's efforts is invited to contact me for more details. Thanks in advance for your interest in this matter. 


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    David L Meyers, MD, MBE, FACEP
    Sinai Hospital of Baltimore
    Berman Institute of Bioethics
    Johns Hopkins University

    "Aneurysm of the abdominal aorta is very often diagnosed when not present, and when present the symptoms may be so obscure that the nature of the trouble is overlooked."
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  • 2.  RE: Seeking patient voices

    Posted 02-24-2022 19:46
    The first thing an Emergency Physician should think when he/she sees a complaint of "chest pain" is AAA. Why? Because if it isn't top of mind, that doc will join the long list of those who miss it. By the time a doc sees the patient, the nurse will have done the ECG and sent troponin, etc. to the lab. It's pretty hard to miss an MI these days, but AAA and PE are still missed. Same goes for back pain: Think spinal epidural abscess in every case and you won't miss it.

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    Charles Pilcher MD FACEP
    Editor, Medical Malpractice Insights - Learning from Lawsuits
    https://madmimi.com/p/5f4487
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  • 3.  RE: Seeking patient voices

    Posted 02-25-2022 07:39
    Agreed. The cognitive forcing strategy ROWs (rule out worst case scenario) at least gets it onto the differential.
    Pat





  • 4.  RE: Seeking patient voices

    Posted 02-26-2022 23:00
    Ha! The old problem of getting from "ought" to "is"! 
    But 15 years of SIDM history, let alone mountains of experience, research and efforts, make the case that saying it should happen does not cause it to happen. The IOM/NAM made the point that fixing the human is not usually a long-term winning strategy absent other efforts. Fixing systems is likely to be more impactful, at least partly by removing impediments and making it easier to do the right thing than the wrong. 

    And even if ROWS is an effective strategy, it probably must be inculcated very early in training (along with "when you hear hoofbeats, think of horses not zebras"?) so that in the real world of production pressures, distractions, faulty memory, cognitive biases, etc etc, etc, it will still float to the surface and have an influence before the patient is discharged.


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    David L Meyers, MD, MBE, FACEP
    Sinai Hospital of Baltimore
    Berman Institute of Bioethics
    Johns Hopkins University

    "Aneurysm of the abdominal aorta is very often diagnosed when not present, and when present the symptoms may be so obscure that the nature of the trouble is overlooked."
    ------------------------------



  • 5.  RE: Seeking patient voices

    Posted 02-27-2022 14:06
    Regarding patient voices, take a look at this important paper by SIDM's own Suze Schrandt and Michael Kanter.



    David

    David L Meyers, MD, MBE, FACEP





  • 6.  RE: Seeking patient voices

    Posted 03-10-2022 12:46





  • 7.  RE: Seeking patient voices

    Posted 03-10-2022 13:05

    Hear, Hear!

     

    William P. Follansbee, MD, 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

    Pittsburgh, PA 15213

    Office: 412-647-3437

    Fax: 412-647-3873

     






  • 8.  RE: Seeking patient voices

    Posted 03-10-2022 14:11
    I came to SIDM as a patient advocate from the kidney cancer world, only when I realized that a misdiagnosis had added dramatically to the risk to my life from a 10cm kidney tumor that went undiagnosed for 8 months.  This, while I was treated for a 'tiny, scabbed-over stomach ulcer' with the presenting cause of severe anemia, 6.6 hgb.  

    Told to eat better, take iron pills, given multiple endoscopies, iron shots, a small bowel study and NEVER was able to read the pathology report that indicated that there was no ulcer and no H. pylori.  Even I knew that stomach ulcers typically were found with H. pylori, but I did not know that a doctor could ignore  or fail to read a simple pathology report.  

    When finally asked to give a family history, I noted my father had been an alcoholic.  With that, I was immediately scheduled for a liver biopsy, and per the doctor, "to confirm the patient's cirrhosis'.  An ultrasound preceded that and within seconds, it was apparent that I had a mass of 10cm on my right kidney.  A CT scan quickly followed, which also showed metastases in my lower lungs.  I did not receive that report either, but did know that I could not trust the recommendation of this doctor.

    Initially I thought that my misdiagnosis, which nearly cost me my life, was rare.  Yet this kind of misdiagnosis as to kidney cancer and so many other diseases is wretchedly common. 

    Patients need to know that they have a right to their records and simply must demand also that the doctor give his rationale for the working diagnosis.  Patients, properly informed, can accept some uncertainty in the diagnosis, but not in the failure to communicate with patients.  

    Everyone reading this would agree.  Time to educate other doctors and all patients that this is the reality and that there needs to be transparency in the recommendations offered.
    Peggy Zuckerman
    www.peggyRCC.com







  • 9.  RE: Seeking patient voices

    Posted 03-12-2022 14:52

    Thanks Pat for sending this along.   Are you in the city very much?   Now that covid is perhaps setting down, it would be great to meet up?    Hope all is well.   Doug

     






  • 10.  RE: Seeking patient voices

    Posted 03-11-2022 08:22
    Thank you for sharing, Dr. Meyers! Although I'm a PhD candidate currently working on my dissertation, I've been working on this kind of research the past 6 years. SIDM and its community (and AHRQ) have given me such valuable resources to cite in my work, and I will definitely be using this in my dissertation. I also cite from Traber Giardina's work, and she has been a tremendous mentor to me.

    Thank you, Suze and Michael, for this publication! I look forward to citing it.

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    Allyson Bontempo, MA
    PhD Candidate / Instructor
    School of Communication & Information
    Rutgers, The State University of New Jersey
    allyson.bontempo@rutgers.edu
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