Why are PRP patient resources a secret?

From the Editor — DRAFT

The following is a discussion about a topic that frustrates many PRP patients and caregivers. We must find a way to have dermatologists provide patients diagnosed with PRP a referral to PRP patient support resources.

When a dermatologist in the US renders a diagnosis of pityriasis rubra pilaris, a diagnosis based on clinical observations and a supporting biopsy, why are PRP patient resources not shared with PRP patients and caregivers? PRP resources are a well-kept secret.

PRP patient resources are routinely excluded in a PRP Treatment Plan

A treatment plan for a PRP patient may include retinoids, immunosuppressants, biologicals and prescription topicals ointments and creams. There may be some specific recommendation of referral if the PRP patient specifically complains about impaired mobility, dexterity, vision and hearing or pain, itching and lack of energy.

But what about dealing with the daily challenges of body, mind and spirit? Dermatologists routinely direct PRP patients and caregivers to the Internet with referrals to Dr. Google, Dr. Yahoo and /or Dr. Bing.

Let’s start with a quick review of PRP patient resources routinely ignored by US dermatologists:

✽  PRP Alliance, Inc. — a 501(c)(3), nonprofit, patient advocacy organization with a simple mission:  to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP); the implementation of more effective and accessible treatment options and an increase in PRP-specific research. The PRP Alliance website links to the following PRP resources:

✽  PRP Survival Guide — an ever-expanding online repository of nearly 400 articles reflecting the experiences and insights of PRP patients and caregivers.

✽  PRP Facebook Support Group — an “Closed Group” for PRP patients and caregivers with a Facebook account. Over 1,000 members have developed a community where the efficacy of treatment options are shared. As important, the PRP Facebook Community provides a forum for venting (bad times) and sharing healing milestones.

✽  PRP Community on RareConnect — an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Community on RareConnect is a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset.

Why are dermatologists either unable or reticent to refer PRP patients to PRP patient resources?

But who can really blame them. It has been said that only 1 in 20 dermatologists will actually treat PRP during their career. Even those who have established tenure at a teaching hospital may treat a half dozen. While a patient diagnosed with psoriasis (2.5 million patients in the US) will likely be told to reach out to psoriasis.org (National Psoriasis Foundation), it is unlikely that a PRP patient will be referred to prpAlliance.org (PRP Alliance).

How much research would a dermatologist have to perform to have the confidence to refer a PRP patient to the PRP Alliance, PRP Survival Guide.PRP Facebook Support Group or PRP Community on RareConnect. Let’s face it, Dr. Google is a safe.

What if the protocol for any rare skin disease was to refer patients to the Genetic and Rare Diseases Information Center.  Rather than wander hither and yon  in search of answers using Google, Yahoo and Bing search engines, go directly to a trusted resource: National Institutes of Health.

For example, search the GARD database for pityriasis rubra pilaris delivers an easy-to-read overview that includes:

✽  Summary
✽  Symptoms
✽  Cause
✽  Treatment
✽  Research
✽  Organizations
✽  Living with
✽  Learn More

While all this information — and a great deal more — is available in the PRP Survival Guide, the GARD rare diseases database should be the first stop on every PRP patient’s journey from onset through remission.

That brings us to a Referral Campaign with one objective: to cause dermatologists to refer every PRP patient to the Genetic and Rare Diseases database as part of the treatment plan.

Here is what we know:

There are 500-plus teaching hospitals in the US with a dermatology department. The PRP Survival Guide already has the list. Unfortunately, no similar list has been identified for teaching hospitals beyond the borders of the US.

Information about each teaching hospital’s dermatology department is available on their website, e.g., faculty names, titles and leadership responsibility,In some cases. email addresses are available.

We also have over 1,500 PRP patients in the PRP Community Database. Most of these have — or had — a dermatologist. Whether PRP savvy or not, these dermatologists may or may not be affiliated with teaching hospitals in the U.S. and abroad.

The first step is data collection. I like to call it “harvesting”.

What information can be gathered via the internet?
✽  Overview: Facility name, location, contact information, web address
✽  Dermatology department: Proper name, contact information, web address
✽  Dermatology department leadership: names. titles, contact information
✽  Website search for pityriasis rubra pilaris information

What information must be gathered via direct contact?
✽  PRP experience during the past five years
✽  Treatment protocol for PRP if such exists
✽  PRP research

Who asks the questions?
✽  PRP patients/caregivers who are actually being treated by the dermatology department at the teaching hospital
✽  PRP patients/caregivers who live in the same state as the teaching hospitals
✽  PRP patients/caregivers who act as representatives of the PRP Alliance representative

How do we ask the questions and gather responses?
✽  Initial contact by telephone to confirm identity of data source.
✽  Followup by email and/or fax

What do we do with the answers?
✽  Enter into the PRP Community Database

I kinda ran out of gas here. Need feedback from PRP patients and caregivers. ANY comments will be appreciated. Use “Leave a Reply” below.

Please don’t post comments on Facebook.


Why are PRP patient resources a secret?

10 Replies to “Why are PRP patient resources a secret?”

  1. I really don’t know. I have informed a couple of doctors at my surgery about these websites and given them information I have learnt myself, from Internet sites. My doctor said, ” You are an interesting case.” Nevertheless, I got the distinct impression that once I had been diagnosed wit this disease, and I am now under a dermatologist, despite verbal support from my doctor, I feel that cutbacks, within the NHS, has led to unnecessary pressures on medical staff. Consequently, there seems to be a need not to highlight this disease. Despite the so called ‘rareness’ of PRP, there does seem to be a dramatic increase.

  2. I’m not sure they are! I was given a fact sheet about PRPwhich suggested I also looked on the http://www.bad.org.uk ( British association of dermatologists) website. Then I found other websites and eventually found the Facebook page.
    The NHS encourages the concept of ‘the expert patient’ encouraging active research and communication about ones condition. Searching out info is, I suggest an important part of the process of understanding and coming to terms with the diagnosis. I was then able to discuss my PRP with my derm team in a cooperative and mutually supportive environment.
    I do not subscribe to the idea of being a passive recipient of expert information. So, I think your question about resources being a secret is a false premise!

  3. Karen Bull — Unlike dermatologists in the US, dermatologists in the UK seem quite willing to refer patients to the BAD website where there is a Patient Information Leaflet about PRP that includes links to the PRP Alliance and the PRP Community on RareConnect.

    I agree that searching out information is “an important part of the process of understanding and coming to terms with the diagnosis”.

    I too “do not subscribe to the idea of being a passive recipient of expert information.” Information in the PRP Survival Guide is not PUSHED out to the PRP community. It is my hope that when someone wants to know about PRP and impaired vision, they will look it up in the Survival Guide and get information they can use to expand their search. If I do my job right, the PRP patient or caregiver will join the Facebook Support Group and ask more questions.

    I agree that “PRP resources being a secret IN THE UK, may be a false premise. Let’s see what other folks from the UK have to say.

  4. Just a note: The Mayo Clinic is NOT listed among the 500-plus teaching hospitals. It is a nonprofit organization and seems to be in a category of it’s own. With more than 3,300 physicians, scientists and researchers, their dermatology departments in Florida, Minnesota and Arizona must be included.

  5. You’ve asked 4 easy questions with hard answers.

    After I was diagnosed by biopsy I went to see my General Practitioner who I have being seening for 25? years with a print out of our FB group and PRP Survival Guide links. He looked at it and laughed as he said “Oh, so now you are internet diagnosing.” He then laid it down and, I’m quite sure, never looked at it again.

    My dermatologist, who of course knew of the biopsy results, and knew quite a bit about PRP, also looked at my offered listings and also just put it down without asking any questions about either site. No interest in taking it further.

    Why ?? I wish I knew as I feel a responsibility to share my knowledge of PRP so others might not have to go through the feelings of being adrift on a sea of ignorance and lonesomeness as I did .

    This morning after you posted your appeal I phoned the local teaching hospital (2nd largest hospital in Canada) to see if I could somehow expand their knowledge of PRP info sources which they could pass on to their patients and was given phone numbers to different departments . I got nowhere. Frustrating.

    Here is a listing of teaching hospitals around the world. I do not know if they have dermatology departments though. https://en.wikipedia.org/wiki/List_of_university_hospitals

  6. Great info — especially the link to the list of teaching hospitals around the world. One of the challenges will be to find people to gather information who speak the “national” language. Not an issue in Canada, UK, New Zealand, Australia, Ireland, et. But when it comes to Germany, Italy, France, Spain, Denmark, Sweden, Norway, etc. we need a “native speaker”. Thanks for the info and story. I will be retelling your story.

  7. I was diagnosed with PRP in mid 1997. My doctor didn’t tell me anything about the disease. I accidentally found the PRP Support Group on the internet sometime in the fall of 1997. I sat there and cried. Just to know that I wasn’t alone and learning what others were going through and sharing information with each other as to what helped and what didn’t was a life saver for me. That website is still there but not as user friendly as it was back then. We had a chat room much like FB is now.
    You are so right about the doctors. They should give us more info about this awful disease and ways to communicate with others that are dealing with it. I know how much that website meant to me then. Thanks for all your support and writing the PRP Survival Guide.

  8. You refer to the US in your question. I’m from Canada and will comment anyway. Upon my second visit to my dermatologist (actually it was the senior partner who was sitting in for my assigned Dr. as she was on holidays and he was the Dr who she consulted with for final diagnosis) he did say ….”Oh, by the way, at our last appointment I forgot to mention what support was available on line such as the PRP Alliance and the Rare Disease one”…….I had already found them and the link to the FB support group. So no secret here. 🙂

  9. Anita — I joined the PRP Support Group on November 28, 2012 — the day I learned that I had been diagnosed with PRP. The PRP Support Group is still listed on various websites even though the content has not be revised since January 2005. There are still a few PRP patients and caregivers who exchange emails. For that reason, the PRP Support Group is still listed as a PRP Resource in the PRP Survival Guide.

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