?Datamining for pernicious anemia?

Janel Hopper janelhopper at COMCAST.NET
Sun Dec 8 21:02:37 UTC 2013


Hello All,

Thank you Dr. Kohn for bringing up my story of pernicious anemia again and giving me an opportunity to clarify a few things.  I just looked into Dr. Sanders book that you mention.  In the article excerpted from the same, she says:

"This patient’s hemogram would have shown anemia and almost certainly an elevated mean cell volume."

I had intermittent iron anemia for many years that was treated by my internist. I sometimes had a subnormal hematocrit that was attributed by a very well-known teaching hospital to be due to celiac and not investigated further at that time. I was taking high-dose vitamins, which was communicated to every physician.

A close examination of the medical literature will show that pernicious anemia can be doing neurologic, gastric and other tissue damage including bone, heart, and CNS without any overt macrocytosis necessarily appearing. A query into problems with B-12 blood testing, especially in cases of pernicious anemia, will retrieve a number of results in PubMed. If anyone is interested in links or further investigation into this, I would like to share more details. Any particulars of my experience needs to maintain the privacy of all the physicians and institutions along the way that certainly all did their best to help me.

When a patient keeps insisting that there is something physicially wrong but "the screen" (electronic medical record) already marginalizes a patient as having "imaginary pain," many subsequent physicians won't think anything needs re-thinking. I am lucky in that I could go for consultations across the country. I am also lucky that the national data record was not yet aggregated at that time.  Eventually (I had enough data points of my related autoimmune conditions), that I stumbled upon pernicious anemia as a related disease and possibility. I was lucky enough to be one with IF blocking antibodies, later also confirmed with parietal cell antibodies, elevated MMA and homocysteine. This simple, specific test (IF Blocking Antibody) that only cost me $35 has been available since 1983. In spite of numerous teaching hospital workups and awareness of my other autoimmune conditions, this test was never used until I requested it. After 40 years of work-ups, this was indeed a shocking finding.

Since decision support software is not widely adopted, a retrospective analysis of patients who have say known thyroid disease along with other, unclear diagnoses such as "fibromyalgia, chronic fatigue, irritable bowel syndrome, mitral valve prolapse, intention tremor, and somatic pain disorder" (all diagnoses I previously had), this population subset could be data-mined to sample test those who have a risk for undetected pernicious anemia.

I hope that some of you may be interested in learning from my experience. I am just a lucky layperson, so please correct me if I make errors. 

Janel

On Dec 7, 2013, at 10:23 PM, Kohn, Michael wrote:

> In sick (i.e. symptomatic) patients, there are two kinds of diagnostic error: we can fail to identify and treat the disease that is causing the illness or we can misdiagnose and inappropriately treat a disease that isn't causing the illness.
> 
> One of the participants on this thread mentioned pernicious anemia.  The Lisa Sanders book (Chapter 9) has an example of a delayed diagnosis of that disease.  I could see missing this as an explanation for chest pain in a busy ED and recommending outpatient evaluation, but it's hard to believe that it wouldn't be picked up eventually.    We also have to worry about overdiagnosis/misdiagnosis.  See Chapter 8 on chronic Lyme Disease.
> 
> Reducing both kinds of diagnostic error is a challenge.  Computerized decision support tools integrated into the EHR may be part of the answer, but we're not there yet.
> 
> MAK
> 
> Michael A. Kohn, MD, MPP
> 
> Associate Professor
> 
> Epidemiology and Biostatistics
> 
> Emergency Physician
> 
> Mills-Peninsula Medical Center
> 
> From: Alan Morris [Alan.Morris at IMAIL.ORG]
> Sent: Saturday, December 07, 2013 4:55 PM
> To: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> Subject: Re: [IMPROVEDX] Missed and Erroneous Diagnoses Common in Primary Care Visits
> 
> I propose that an error is any deviation from the intended, evidence-based, target decision.  Some errors are trivial and of little consequence.  Some carry a major risk to the patient. In an unusually tightly controlled ICU at the Hebrew University Hospital in Jerusalem, Gopher et al. reported about 174 clinician interactions/patient/day.  99% of these clinician interactions were performed correctly by RNs and MDs. (It is the rare, if any, clinical unit that can aspire to a 99% correct performance rate.)  However, the 1% error rate led to a major threat to life or limb per patient every other day, on average!  Most people think that technical rock climbing is a dangerous activity.  However, few climbers would ever tie onto a rope and climb, if they thought they would be subjected to a major threat to life or limb every other day because of error.
> 
> Surprising low clinician error rates associated with almost unachievable correct performance, can lead to unacceptable risks to patients.
> 
> Extrapolating these ICU data to the outpatient setting is difficult.  Nevertheless, I believe we should pay attention to all errors, and categorize them with respect to patient risk.
> 
> Have  a nice day.
> 
> Alan H. Morris, M.D.
> Professor of Medicine
> Adjunct Prof. of Medical Informatics
> University of Utah
> 
> Director of Research
> Director Urban Central Region Blood Gas and Pulmonary Laboratories
> Pulmonary/Critical Care Division
> Sorenson Heart & Lung Center - 6th Floor
> Intermountain Medical Center
> 5121 South Cottonwood Street
> Murray, Utah  84157-7000, USA
> 
> Office Phone: 801-507-4603
> Mobile Phone: 801-718-1283
> Fax: 801-507-4699
> e-mail: alan.morris at imail.org
> e-mail: alanhmorris at gmail.com
> 
> 
> 
> 
> 
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