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.”
“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 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.
PRP QOL Discussion Guide
(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?
(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
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
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?
(1) Did PRP change your relationships with family, friends, or coworkers? If so, how?
(2) Did PRP change the way you interacted with strangers?
(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)?