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PRP Quality of Life Focus Group: May 24, 2021

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Moderator’s Note. The purpose of this webpage is to provide an overview of the upcoming PRP “Quality of Life” Focus Groups.
A focus group is a research technique used to collect data through group interaction. A focus group is designed to identify feelings, perceptions, and thoughts about a particular topic. The first PRP Focus Group took place on Tuesday, April 13, 2021 and included 12 patients. Each participant is considered a subject matter expert for their unique version of PRP.

Criteria for participation

“Oregon Health & Science University (OHSU) is looking for individuals 18-89 years of age with a personal history of pityriasis rubra pilaris (PRP) to participate in a focus group (OHSU IRB #22735). The topic of the focus group will be PRP’s effects on quality of life and will entail roughly a 2-hour time commitment. If you are interested in participating or would like more information, please reply to this email or contact the principal investigator, Dr. Teri Greiling, at PRPstudy@ohsu.edu.”

IRB-approved Statement

“Dr. Teri Greiling is an OHSU dermatologist who sees patients from across a wide spectrum of dermatologic diseases and has a special interest in autoimmunity and PRP. She has led two investigator-initiated drug trials investigating treatments for PRP and helped author the National Organization for Rare Disorders consensus statement on PRP. She is passionate about treating PRP and hopes to use the data obtained in this focus group to better understand the burden of PRP on patients’ lives.”

Patient-Reported Outcomes

The general theme of the PRP Focus Group is the DLQI. Note: each participant will be given a copy of the DLQI in advance of the Focus Group gathering and use it as a reference.

❏ What signs and symptoms does the DLQI capture particularly well?

❏ What issues are NOT captured particularly well by the DLQI.

❏ What symptoms were most bothersome to you at the peak of your PRP?

❏ Why were these symptoms in particular the most bothersome?

❏ What areas of your personal PRP experience did the DLQI fail to adequately capture?

Abstract on the Dermatology Life Quality Index (DLQI) – Finley, A.Y.

The following five statements represent the ABSTRACT published in May 1994 that prefaced the introduction of the DLQI to the international community of dermatologists.
.statements are
Statement #1 – “The Dermatology Life Quality Index (DLQI) is a simple practical questionnaire technique for routine clinical use.”
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Comment: Some might say that the DLQI is “too simple ” and that the challenges of treating PRP should not be considered “routine clinical use”.
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Statement #2 – “One hundred and twenty patients with different skin diseases were asked about the impact of their disease and its treatment on their lives; a questionnaire, the DLQI, was developed based on their answers.”
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Comment : Considering the fact that there are over 3,000 skin disorders and nearly 600 “rare” skin disorders, a cohort of 120 seems woefully inadequate for a DLQI appropriate for pityriasis rubra pilaris.
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Statement #3 – “The DLQI was then completed by 200 consecutive new”patients attending a dermatology clinic. This study confirmed that atopic eczema, psoriasis and generalized pruritus have a greater impact on quality of life than acne, basal cell carcinomas and viral warts.”
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Comment : A case could be made that patients diagnosed with PRP would have a greater impact on quality of life than eczema, psoriasis, generalized pruritus , acne, basal cell carcinomas and viral warts. The severity of atopic eczema and psoriasis is not noted.
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Statement #4 – “The DLQI was also completed by 100 healthy volunteers; their mean score was very low (1.6%, s.d. 3.5) compared with the mean score for the dermatology patients (24.2%, s.d. 20.9).”
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Comment : Could a case could be made that patients diagnosed with PRP would have reported a greater impact on quality of life than those diagnosed with atopic eczema, psoriasis, generalized pruritus , acne, basal cell carcinomas and viral warts?
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Statement #5 – The reliability of the DLQI was examined in 53 patients using a 1 week test”retest method and reliability was found to be high (γs=0.99).
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Comment : Could a case could be made that patients diagnosed with PRP would have suffered a fan greater impact on their quality of life?”

PRP QOL Discussion Guide

Physical Impacts

(1) Please tell us about your initial experience with PRP. What was the first sign that something was wrong?

(2) Please discuss your experience with the physical symptoms of PRP.

(a.1) What symptoms bothered you the most?

(a.2) Did that change throughout the course of the disease?

(b.1) What symptoms bothered you the least? [Annoying rather than serious]

(b.2) Did that change throughout the course of the disease?

(3) Are there any symptoms of PRP that you feel were not given adequate attention by your physician? If so, what were they?

(4) What was the FIRST SIGN that you were “getting better”? See: Healing Milestones

(5) What other symptoms that we haven’t discussed yet should be given adequate attention in a PRP quality of life questionnaire?

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Psychological Impacts

(1) If you are comfortable, please share how PRP affected your mental health.

2) Is/was your mental state particularly affected by certain symptoms or limitations imposed by PRP? If so, what are they?

(3) At what point, if any, during the course of your PRP did you feel you had hit “rock bottom?” What made you feel that way?

(4) At what point in the course of your PRP did your mental state start to improve?

(5) What kinds of coping strategies did you use to manage your mental health?

(6) Can you think of any ways that your physician could have helped you improve your mental health while you had PRP?

Daily Living Impacts

(1) Please tell us about how your daily routine is/was impacted by PRP.

(2a) What daily activities are made more difficult because of PRP symptoms?

(2b) Are there any activities of daily living (personal hygiene, mobility, eating, etc.) you are/were unable to perform without assistance?

(3) How did you adapt your lifestyle to fit your limitations, if any?

(4) How was your sleep affected by PRP?

Social Impacts

(1) Did PRP change your relationships with family, friends, or coworkers? If so, how?

(2) Did PRP change the way you interacted with strangers?

Financial Impacts

(1) Did the physical, psychological, social, or daily living effects of PRP affect your finances in a major way (for example, changing your ability to work or the type of work you could do)?

(2) Did the cost associated with PRP medical care have a large impact on your finances (for example, leading to medical debt or difficulty paying your regular bills)?

bill.mccue@prpAlliance.org