PRP Survival Guide Needs Assessment

From the Editor –

I began writing the PRP Survival Guide in November 2013. At first I collected information readily available on the internet which was, unfortunately, redundant, incomplete and too often written for an audience of healthcare professionals. By April 2014 it had become apparent to me that original articles needed to be developed to fill in the gaps. From April 1, 2014 to October 1, 2015, 24 issues (598 pages) were published and distributed to an email list of over 1,000 PRP patients and caregivers.

The Crash of 2017

The photo below represents the destruction of an F-3 tornado. In mid-January 2017 an unexpected crash of a two servers destroyed the PRP Alliance website and it’s backup. Our website suffered the equivalent of an F-5 where only the sidewalk and concrete stairs would remain. The structure would be gone and the contents of the dwelling scattered for miles. Think “total devastation”.

Organization

It took a month to confirm that prpAlliance.org could not be salvaged. While I still had 24 issues of the PRP community newsletter backed up on my computer, the PRP Survival Guide (480-plus articles) would have to be reconstructed from scratch.

By mid-May the rollout of the reconstituted PRP Survival Guide began. The first step was the reconfirmation of the basic organization. The goal was to create a logical classification for PRP-related information.

❏½ Chapter 1 – PRP Basics Index
❏½ Chapter 2 – Diagnosing PRP
❏½ Chapter 3 – Treating PRP
❏½ Chapter 4 – Daily Life with PRP
❏½ Chapter 5 – PRP Parents and Kids

❏½ Chapter 6 – Remission and PRP
❏½ Chapter 7 – PRP Research
❏½ Chapter 8 – PRP Advocacy

Actually, the first iteration did not include Chapter 5 – PRP Parents & Kids. This was an omission that was quickly noted by the likes of Ginny Maxwell and Christine Gunther. This is a section of the PRP Survival Guide where improvement is required.

Primary Audience

The PRP Survival Guide has a well-defined target audience.

❏½ Newly diagnosed PRP patient

❏½ The caregiver of a newly diagnosed PRP patient

❏½ A PRP patient who just found the PRP Survival Guide

❏½ The caregiver of a PRP patient who just found the PRP Survival Guide

There is no expectation that a dermatologist will look upon the PRP Survival Guide as a scientific journal. However, we can position the PRP Survival Guide to be an accurate representation of the PRP experience.

The most accurate definition of our target audience is: The next PRP patient or caregiver who reaches us with a PRP-related question in need of an “lay language” answer.

Chapter-by-Chapter Evaluation

Every chapter in the PRP Survival Guide – and every article/post must be evaluated to determine:

❏½ Readability
❏½ Accuracy
❏½ Completeness

❏½ Working links

❏½ Sources & Attributions

❏½ Translate button

Chapter 1

Every chapter has a brief introduction to tell readers what to expect. While there is no expectation that family and friends, co-workers and employers, teachers and school administrators will visit the PRP Survival Guide, we can make it easier to the PRP patient/caregiver to provide a link to a specific question/answer.

Chapter 1 was designed to present the Frequently Asked Questions that Newbies might ask. It also reinforces the eight-chapter organization of the PRP Survival Guided gives the user a “taste” of what can be found in Chapters 2-8.

These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers, family and friends, co-workers and employers, teachers and school administrators, and so many more.

The goal of this chapter is to answer the basic questions for each chapter. This is a quick overview. The reader can “touch” each chapter briefly.