OHSU, PRP and Quality of Life Research

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.
 
The PRP Alliance joined forces with Oregon Health & Science University (OHSU) to recruit individuals 18-89 years of age with a personal history of pityriasis rubra pilaris (PRP) to participate in a focus group.  The topic of the focus group was PRP’s effects on quality of life and will entail roughly a 2-hour time commitment.
 
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. Subsequent focus groups were held on June 21, 23 and 25. A total of 39 PRP patients participated in one of the four ZOOM gatherings. Each participant is considered a subject matter expert for their unique version of PRP.

BACKGROUND

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?