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June Focus Groups

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Moderator’s Note.  The purpose of this webpage is to provide an overview of the next series of 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.”
.
Comment: Some might say that the DLQI is “too simple ” and that the challenges of treating PRP should not be considered  “routine clinical use”.
.
 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.”
.
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.
 .
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.”
 ,
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.
.
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).”
,
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?
,
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).
,
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?

WHAT WE FEEL
❏   my skin is itchy
❏   I feel physical discomfort or sore
❏   I have a burning sensation on or under my skin
❏   my skin is very sensitive to touch
❏   my skin is very sensitive to changes in temperature
❏   I am extra sensitive to the sun
❏   my skin, hair or nails look visibly different
❏   I have rashes on my skin
❏   I have plaques or lesions on my skin (including spots, pimples or pustules)
.
OUR SKIN
.
❏   I have rough or uneven skin
❏   I have white patches on my skin
❏   I have lost hair
❏   I have blisters on my skin
❏   my skin weeps, oozes or leaks
❏   .my skin peels off
❏   areas of my skin have changed color (red-purple)
❏   my skin is very oily
❏   my skin is very dry
❏   I scratch my skin a lot
❏   I have wounds from scratching
❏   my skin bleeds
❏   my skin is scarred
❏   my skin flakes, sheds or falls off
.
ENERGY & SLEEP
.
❏   I feel tired, exhausted or lack energy
❏   my sleep is disturbed
❏   I struggle to fall asleep
❏   I feel fatigued in the morning
.
OTHER ISSUES
.
❏   I have been hospitalised (not for a routine appointment)
❏   I struggle to walk (mobility)
❏   I have developed a related condition
❏   the treatments I take make my symptoms worse
❏   the treatments I take increase the risk of developing other
.
PRP 101 — Ears and impaired hearing
PRP 101 — Eyes and impaired vision
PRP 101 — Feet and impaired mobility
PRP 101 — Hands and impaired dexterity
PRP 101 — Flares
PRP 101 — Lips
PRP 101 — Lymph nodes and glands
PRP 101 — Scalp
PRP 101 — Swollen feet and legs
PRP 101 — Weight
. 

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?

FROM THE GRIDD SURVEY

Applicable?

1. …I feel stressed
2. …I feel emotional pain
3. …I feel hurt by other people
4. …I feel anxious
5. …I feel worried or nervous
6. …I worry about socialising or social situations
7. …I worry about being rejected
8. …I worry that my condition will get worse
9. …I worry about getting scars
10. …I worry that other parts of my body will be affected
11. …I worry that I will develop other conditions
12. …I worry that other people define me by my condition

13. …I worry about the side effects of my treatment

14. …I worry that I will pass my condition on to my future children

15. …I worry that my condition is contagious

16. …I worry that other people think my condition is contagious

17. …I worry that my treatment will be stopped

18. …I worry that my treatment will not be effective

19. …I worry that my treatment will not work quick enough

20. …I worry that my condition will flare up

21. …I worry that my condition will worsen

22. …I am afraid of my condition

23. …I am always checking my skin, hair or nails

24. …I am always thinking about my condition

25. …I am always conscious of or find it hard to think of anything other than my condition
26. …I am always checking my surroundings for potential triggers or harms
27. …I cannot be spontaneous
28. …I often feel low, down or blue
29. …I often feel sad or upset
30. …I feel depressed
31. …I have low self-esteem
32. …I often have low motivation
33. …I often feel hopeless or helpless
34. …I have thought about hurting or harming myself
35. …I have intentionally hurt or harmed myself

36. …I have thought about taking my own life

37. …I have attempted to take my own life

38. …I feel ashamed, embarrassed or humiliated

39. …I feel angry, annoyed or irritated

40. …I feel betrayed by my body

41. …I often feel frustrated

42. …I am jealous of others

43. …I feel guilt

44. …I feel guilty that my child has a dermatological condition

45. …I feel that I have let my family down

46. …I often feel shocked or surprised

47. …I often feel disappointed

48. …I generally feel desperate

49. …I feel desperate for a cure

50. …I feel desperate for more effective treatments

51 …I am desperate for some relief

52 …I am desperate for there to be more awareness of my condition

53. …I feel empowered, strong or resilient

54. …I feel grateful or appreciative

HOW IMPORTANT

1. …I struggle to concentrate

2. …my skin condition is my identity

3. …I struggle to feel masculine or feminine

4. … my identity or personality has changed

5. …my values have changed

6. …my perspective has changed

7. …I have accepted myself

8. …my condition has become a normal part of my life

9. …I am different from other people

10. …I have changed my life goals and/or expectations

11. …my life course has been affected

12. …I feel less attractive

13. …I have changed my appearance

14. …I have changed how I choose to style myself (e.g. clothes, hairstyle, makeup)

15. …I am self-conscious

16. …I feel exposed

17. …I am suspicious

18. …I am cynical

19. …I expect other people to treat me differently

20. …my choices are restricted

21. …my choice of clothes is affected

22. …my choice of food, drink or the products I can use is affected

23.…I often feel confused or uncertain

24. …I have little control over my life

25. …I feel like I have lost control

26. …I find it hard to stop scratching or picking at my skin

27. …I am dependent on my treatments or doctor

28. …I feel pressure to perform like people who don’t have a dermatological condition

29. …I have something to prove

30. …other people pressure me into things I cannot or should not do

31. …I have been abandoned by other people

32. …I have been abandoned by the healthcare system

33. …I have lost confidence in myself

34. …I have lost confidence in other people

35. …I have lost confidence in the healthcare system

36. …I think my condition is the source of all my problems

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)?

 Please email Bill McCue if you are interested in participating in the upcoming PRP “Quality of Life” Focus Groups

bill.mccue@prpAlliance.org

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