I am new to this mail group so please excuse me if I misunderstand this.  I have been teaching EBM for some time and am aware of the uncertainty generated by lack of evidence. However, this area would seem to be a classic case for the value of qualitative not quantitative research. Good quality qualitative research can provide valuable insight for decision making. For example, it may help you understand why a perfectly good treatment is not actually acceptable to patients. Just because this does not fit into the hierachy of evidence does not mean that it is not valuable.

Elaine





Elaine Bentley
Lecturer in Pathology Education
University of Nottingham Medical School at Derby
Derby City General Hospital
Derby, DE22 3DT
Tel: 01332 7 24642

>>> Mike/Linda Stuart <[log in to unmask]> 07/07/05 20:47:23 >>>
 I would consider the reports from patients to be "evidence" as well --
and of "uncertain" quality as is the "evidence" from the experts and for
all the reasons Dr. Sousa has raised. 

"How EBM can help" is simply to say that you strive to see if valid and
useful scientific information can reduce your uncertainty.  At this
point, with the available information, the medical literature cannot
provide us with a clear answer.  (Is risk information available?)

After trying to round up everything that might be germane to the issue
and understanding what the quality of that evidence you might look at
our model for patient decision-making where, when lack of helpful
evidence leaves one uncertain, then it is a matter of sharing that
information and assorted facts with the patient -- then engaging with
them to determine what mode of decision making they desire.

http://www.delfini.org/page_SamePage_PatDM.htm#dm 

Good luck, Mike

-- Michael Stuart MD
President, Delfini Group, 
Clinical Asst Professor, UW School of Medicine
6831 31st Ave N.E.
Seattle, Washington 98115
206-854-3680 Mobile Phone
206-527-6146 Home Office
[log in to unmask] 
www.delfini.org 
 

-----Original Message-----
From: Evidence based health (EBH)
[mailto:[log in to unmask]] On Behalf Of Aron Sousa
Sent: Wednesday, July 06, 2005 5:51 AM
To: [log in to unmask] 
Subject: low Level of evidence and ambiguous genitals


I have a question about the very bottom of the evidence hierarchy.  

Most of my work as an educator and clinician deals with issues at the
top of the evidence hierarchy, but of late I have become involved in a
clinical area with no high level and little low level clinical evidence.
I am an internist who has begun to care for adult patients who were born
with ambiguous genitalia (intersex conditions).   Most of these people
underwent (and many children still undergo) surgeries designed to
"normalize" the appearance of their genitals (we are not talking about
urinary, sexual, or reproductive function).  In terms of the available
evidence, the intellectual basis of the surgeries (children with
abnormal genitals become abnormal adults) is based on a fraudulent case
study (John-Joan), there is no evidence of a need for these surgeries,
there are a series of poorly done case series of short-term surgical
outcomes, and there is a whole host of expert opinions and published
MGSATs (multiple guys sitting around together). When pressed for
justification, surgeons (and parents) tend to fall back to fears of
future schoolyard and lockerroom bullying and harassment.

In general I'd say that you have to do the best you can with the
evidence you have, but here is the thing.  The adult patient reports of
their treatment are horrific and impressive in their volume and
consistency.  Multiple scholars and reporters have looked for patients
happy with their treatment and not found one -- not one, not even one
who is happy but not willing to go public.  In truth finding such a
patient is a bit hard to do since a successfully treated patient would
have been lied to and would not know of their condition. (There are
clearly ethical problems as well.)  Independent patient report does not
make most hierarchies of evidence but in the Internet era is one of the
most prevalent data reports we have.  

In this situation there are patient opinions on the value of surgery
that are nearly unanimous but uncontrolled and self selecting vs.
experts with little intellectual or ethical standing.  How can EBM help
me deal with this?  No fair punting and suggesting I get better data.

Aron Sousa, MD
Dept. Medicine
Michigan State University 

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