Plain Language Summary
Introduction
Methods
Study Objectives and Design
Literature Review
Clinician Input
Concept Elucidation
Item Generation
Cognitive Debriefing
Data Analysis
Results
Literature Review and Clinician Input
HRQoL/functional concepts | Frequency of mention, n (%) | |||
---|---|---|---|---|
Total | In relation to psoriasisa
| In relation to genital psoriasisb
| In relation to both psoriasis and genital psoriasisc
| |
Psychological feelings (e.g., mood disturbance) | 42 (80.8) | 41 (78.8) | 1 (1.9) | 0 (0) |
Social relationships (including social stigmatization) | 37 (71.2) | 35 (67.3) | 2 (3.8) | 0 (0) |
Physical activities or general physical functioning | 31 (59.6) | 30 (57.7) | 1 (1.9) | 0 (0) |
Daily living and activities | 29 (55.8) | 28 (53.8) | 1 (1.9) | 0 (0) |
HRQoL | 29 (55.8) | 28 (53.8) | 1 (1.9) | 0 (0) |
Work or school | 26 (50.0) | 25 (48.1) | 1 (1.9) | 0 (0) |
Recreation | 20 (38.5) | 19 (36.5) | 1 (1.9) | 0 (0) |
Sexual functioning | 19 (36.5) | 15 (28.8) | 3 (5.8) | 1 (1.9) |
Vitality | 7 (13.5) | 7 (13.5) | 0 (0) | 0 (0) |
Financial | 4 (7.7) | 4 (7.7) | 0 (0) | 0 (0) |
Cognitive functioning | 1 (1.9) | 1 (1.9) | 0 (0) | 0 (0) |
Sexual function concepts | Frequency of mention, n (%) | |||
---|---|---|---|---|
Total | In relation to psoriasisa
| In relation to genital psoriasisb
| In relation to both psoriasis and genital psoriasisc
| |
Dyspareunia | 2 (4.5) | 1 (2.3) | 1 (2.3) | 0 (0) |
Increased discomfort/worsening of symptoms after sex | 2 (4.5) | 0 (0) | 2 (4.5) | 0 (0) |
Sexual dysfunction | 2 (4.5) | 1 (2.3) | 0 (0) | 1 (2.3) |
Bleeding during sex | 1 (2.3) | 1 (2.3) | 0 (0) | 0 (0) |
Difficulty moving during sex | 1 (2.3) | 1 (2.3) | 0 (0) | 0 (0) |
Ripping of skin during sex | 1 (2.3) | 1 (2.3) | 0 (0) | 0 (0) |
Vaginal dryness | 1 (2.3) | 1 (2.3) | 0 (0) | 0 (0) |
Concept Elicitation Interviews
Characteristics | Number of patients responding |
n (%) or mean (SD) |
---|---|---|
Age, years [mean (SD)] | 20 | 45 (14.2) |
Sex, n (%) | 20 | |
Male | – | 9 (45) |
Female | – | 11 (55) |
Race, n (%) | 20 | |
White | – | 18 (90) |
Black or African-American | – | 1 (5) |
Two or more races | – | 1 (5) |
Duration of psoriasis, years [mean (SD)] | 19 | 18 (14) |
Duration of genital psoriasis, years [mean (SD)] | 20 | 7.5 (9.7) |
BSA score, mean (SD) | 15 | 10.4 (12.7) |
Self-reported general health within past week, n (%) | 20 | – |
Excellent | – | 2 (10) |
Very good | – | 4 (20) |
Good | – | 11 (55) |
Fair | – | 3 (15) |
Poor | – | 0 |
Self-reported severity of overall psoriasis symptoms (worst over past 3 months), n (%) | 20 | – |
0 (clear) | – | 0 |
1 | – | 1 (5) |
2 | – | 1 (5) |
3 | – | 5 (25) |
4 | – | 5 (25) |
5 (severe) | – | 8 (40) |
Self-reported severity of genital psoriasis symptoms (worst over past 3 months), n (%)a
| 20 | – |
0 (clear) | – | 0 |
1 | – | 0 |
2 | 1 (5) | |
3 | – | 5 (25) |
4 | 8 (40) | |
5 (severe) | – | 6 (30) |
Sexual activity status, n (%) | 20 | – |
Not active | – | 9 (45) |
Active | – | 9 (45) |
Not askedb
| – | 2 (10) |
Currently receiving treatment for overall psoriasis, n (%) | 20 | 14 (70) |
Sexual impact concepts | Frequency of mention, n (%) | ||
---|---|---|---|
Total | Spontaneous | After probing | |
Decreased sexual frequency | 16 (80) | 7 (35) | 9 (45) |
Worsening of genital psoriasis symptoms after sexual activity | 16 (80) | 12 (60) | 4 (20) |
Negative effects on sexual experience | 16 (80) | 13 (65) | 3 (15) |
Avoidance of sexual relationships | 15 (75) | 12 (60) | 3 (15) |
Reduced sexual desire | 11 (55) | 2 (10) | 9 (45) |
Representative patient quotations
|
Decreased sexual frequency
It’s decreased it a lot I haven’t had sex in about 5 months Well, you know, you, there’s no sex life I’m not as sexually active now as when I was, you know, 25 or 21, but so it, it’s, it has gotten to the point you just don’t have relations I would say it’s easily cut my frequency down in half It’s, it’s taken it away just because, I mean, it’s just too painful No, I, it doesn’t, unless, unless there’s an injury. That’s the only time I’m kind of apprehensive about it Yeah, so I don’t do it much…. Not very often. It really affects that, trust me
Avoidance of sexual relationships
Well, you know, it’s just another factor that you have in your mind that you really wouldn’t want to expose that to anyone or have to explain it or have them question you. So you’d rather just skip the whole thing… It probably weighs on the side of I’m not looking for anybody No, not currently right now because it kind of comes and goes in stages. I have been off and on but there’s definitely a lot of stress because you don’t know if it’s going to flare up that week or next week or when and it’s just a lot to deal with. There’s not many girls that would be too understanding of what’s going on. Most people think it’s cracking and dry skin and not a lot of people understand psoriasis so they would think, you know, STD or this or that or what’s wrong with you or something. So it’s just I’ve steered away from it, I guess, a little bit |
Development of GenPs-SFQ
Please answer the questions based on your psoriasis symptoms in the genital areaa within the past week | Response options |
---|---|
In the past week, how many times did you engage in sexual activityb? | None/zero |
Once | |
Two or more | |
In the past week, how often did your genital psoriasis limit the frequency of your sexual activityb? | Always |
Often | |
Sometimes | |
Rarely | |
Never |