The Orphan Patient

by

David J Elpern MD

Williamstown, MA, USA

on April 2, 2006

 

Dermatologist, The Skin Clinic, Williamstown, MA, USA

 

On March 2, 2006, Walter Shelley gave a talk entitled “Preserving the Passion for Dermatology” at the annual Dermanitis Day conference in San Francisco, USA. After 60 years as a physician, he is eminently qualified to address this topic. One of the points he made was to “always have a project.” An enduring passion of his, dating back many decades, has been adopting “orphan patients” (OP). This led us to the realization that VGRD and Anak VGRD exist for this very purpose. Here are some thoughts about the orphan patient. As you peruse the cases presented on these two web sites, it might be helpful to think of many of our cases as OPs. Last week’s patient, the three year-old girl with the giant congenital melanocytic nevus is such a patient. Her problem is just too complicated and the outcome too uncertain for most busy practitioners. Yet, she needs someone to be there, someone her parents and she can trust.

If you google “orphan patient”, the third and sixth hits are to publications by Dorinda and Walter Shelley.

#3. The orphan patient. (1)
The orphan patient. Shelley WB, Shelley ED. Human Research PMID: 3344016 [PubMed - indexed for MEDLINE] (Shelley WB, Shelley ED.The orphan patient. N Engl J Med. 1988 Mar 10;318(10):646)

#6. Consultations in Dermatology - Cambridge University Press (2)
Our practice has always specialized in helping the orphan patient. An orphan patient is one with a unique, inchoate, baffling, and often disabling ...
www.cambridge.org/uk/catalogue

In this area, as in so many others, the Shelleys lead the pack.

There are orphan drugs, orphan diseases and orphan patients. Orphan patients (OP ) come in many categories. The following is an incomplete list.

1. A common definition is a patient without a doctor. In Canada, this individual is conceived of as a patient without a primary care provider. The situation in the U.S. is more often more ominous.

2. The Shelleys in their 1988 letter to the NEJM define the OP as an individual “with a unique, inchoate, baffling and often disabling disease and yet clearly not discernable in the medical literature.” (1) A great example appeared the other day in the New York Times, March 21, 2006. This was a short piece by a patient with chronic meningococcemia. Specialists missed it, but a dogged GP who sat down and invested time in the patient made the diagnosis. (I’ll send this piece to anyone who wants to read it)

3. Patients who cannot (for any of a number of reasons) get the care they need or want. This might be due to no health insurance or poor health care coverage. In the States, many physicians don’t see patients with Medicaid because reimbursement is poor. Illegal immigrants are frequently orphan patients.

4. Patients who live in remote areas where specialty care is spotty or nonexistent.

5. Those individuals who have disorders that are too complicated or time-consuming for a busy doctor. Dr. Foong’s patient presented on March 21 is a good example.

We have left out some categories. Please supply them if know of others we overlooked.

Over the past five years a number of us have worked on Virtual Grand Rounds in Dermatology. (3) This was conceived of as a collegial meeting ground for dermatologists who might not have the luxury of being associated with a medical center or for those academics who are willing to share their expertise with far-flung cyber-colleagues. It is a place where difficult patients can be presented for help with diagnosis and treatment. We aspire to emulate Chaucer’s student: “And gladlye wolde he lerne and gladlye teche.”

VGRD (and the more recently created Anak-VGRD) are vehicles to help the OP (3,4). Their case histories can be presented on either of these sites and they may benefit from the opinions of many seasoned dermatologists from around the world. Until hearing Dr. Shelley address this topic we did not realize that perhaps one of VGRD’s most notable properties could be its role in helping these individuals.

Please join us in adopting orphan patients. “Clinical medicine thrives on the study of the unique patient, as well as the study of DNA. Don’t we in medicine need these orphans as much as they need us?”(2)

References:

1. Shelley WB, Shelley ED. The Orphan Patient. NEJM 1988; 318:646
2. Shelley WB, Shelley ED. Consultations in Dermatology: Studies of Orphan and Unique Patients. Cambridge University Press 2006
3. Virtual Grand Rounds in Dermatology http://www.vgrd.org
4. Pre-VGRD (Anak-VGRD) http://www.vgrd.blogspot.com

Comments from Faculty and Members

Benjamin Barankin MD, Department of Dermatology, University of Alberta, Edmonton, Canada on April 2, 2006 At least in Dermatology, the Shelleys have been pioneers in the movement to educate and encourage us to adopt the orphan patient. Their legacy in this regard is beautifully discussed in their articles, speeches, and most recent book on the orphan patient. Adopting orphan patients should be part of every physician's duty, and perhaps as some schools continue to modify the Hippocratic Oath to keep it current, the addition of "and every physician will do his or her part to adopt and assist the orphan patient." Brian Maurer, Enfield, CT, USA on April 2, 2006 Orphan patients, like orphan drugs, aren't money-makers. They require time--that most valuable of all commodities--and expertise, which many busy practitioners lose over the years as they rush through daily patient loads. Caring for such patients requires a change in provider attitude and priorities. No one can care exclusively for orphan patients, but most of us can carve out some time in our busy schedules to care for a select few. At the end of the day, we may go home with less money in our pockets, but feeling better about ourselves for the service we render to those who truly need it. Khalifa Shaquie MD, PhD, Professor of Dermatology, College of Medicine, University of Baghdad, Baghdad, Iraq on April 2, 2006 In Iraq, because of occupation, most patients are now orphan. The health care system is vey poor, drugs are scanty and expensive, this especially concerns children. Many Iraqi children had lost their parents because of the war: so they are really orphan, in addition to lacking any medical care. But no body is interested to help especially the civilised people? Politicians are poor enough to do any thing fruitful. Great thanks to VGRD and PreVGRD especially Dr Elpern for taking care of orphan patients every where in the globe and without discrimination. Good luck from heart Carl James Allen MD, MPH, Sydney, Australia on April 3, 2006 I had a similar 23-year-old orphan patient with large nasty keloids that developed from insect bites at age 11. She had consulted a plastic surgeon who tried paring and steroid injections but with no improvement. David Adelson MD, Tulsa, OK, USA on April 3, 2006 This is an important and forgotten role we play as specialists. I often categorize a case in terms of "octane". Low octane being pretty routine and adequately treated by most primary care physicians and high octane being those cases that required the three years of training, board certification and current CME. This week you stress the importance of treating these tough cases. Walter Shelley MD, PhDand Dorinda Shelley MD, Professors of Dermatology, Medical University of Ohio, Toledo, OH, USA on April 7, 2006 Dr. David Elpern has written a persuasive essay on the need for world wide consultation for problem patients who have been told repeatedly "There is nothing more that can be done for you." When we began practice such orphan patients were sent to university centers where the teaching staff would pool their experiences and residents would scan the Index Medicus and text books for help. Today, the orphan patient has many wonderful adoptive parents, i.e., the dermatologists on the two virtual Grand Rounds web sites used by Elpern. We are thrilled to see this. Please go to your computer today and adopt one of these orphan patiens. It will make both of you happier.