Skip to main content
Top
Published in: Dermatology and Therapy 1/2018

Open Access 01-03-2018 | Original Research

The Development of the Genital Psoriasis Sexual Frequency Questionnaire (GenPs-SFQ) to Assess the Impact of Genital Psoriasis on Sexual Health

Authors: Alice B. Gottlieb, Brian Kirby, Caitriona Ryan, April N. Naegeli, Russel Burge, Alison Potts Bleakman, Milena D. Anatchkova, Jennifer Cather

Published in: Dermatology and Therapy | Issue 1/2018

Login to get access

Abstract

Introduction

Patient-reported outcome measures (PROs) exist for psoriasis but not genital psoriasis (GenPs).

Methods

This cross-sectional, qualitative study in patients with moderate-to-severe GenPs was conducted to support development of a PRO for measuring the impact of GenPs on sexual activity and to establish content validity. The impacts of GenPs were identified in a literature review. Findings from the literature review were discussed with clinicians, and then patients with GenPs were interviewed.

Results

From the literature review, 52 articles, 44 abstracts, and 41 clinical trials met predefined search criteria. Of these, 11 concepts emerged as having theoretical support for use as measurable impacts of psoriasis symptoms on patients; these concepts included sexual functioning and general health-related quality of life (HRQoL). These concepts were confirmed and expanded upon by two clinicians who routinely care for patients with GenPs. Interviews were then conducted with GenPs patients (n = 20) to discuss the impact of GenPs on their HRQoL. Eighty percent of patients reported that GenPs impacted sexual frequency. The two-item GenPs Sexual Frequency Questionnaire (GenPs-SFQ) was developed to assess limitations on sexual activity frequency because of GenPs. Cognitive debriefing with an additional 50 patients with GenPs confirmed the utility and understandability of the GenPs-SFQ.

Conclusion

The GenPs-SFQ may have utility in clinical trials involving GenPs patients and in routine clinical practice.

Funding

Eli Lilly and Company.

Plain Language Summary

Plain language summary available for this article.
Appendix
Available only for authorised users
Literature
1.
go back to reference Fouéré S, Adjadj L, Pawin H. How patients experience psoriasis: results from a European survey. J Eur Acad Dermatol Venereol. 2005;19(Suppl 3):2–6.CrossRefPubMed Fouéré S, Adjadj L, Pawin H. How patients experience psoriasis: results from a European survey. J Eur Acad Dermatol Venereol. 2005;19(Suppl 3):2–6.CrossRefPubMed
2.
go back to reference Meeuwis KA, de Hullu JA, Massuger LF, van de Kerkhof PC, van Rossum MM. Genital psoriasis: a systematic literature review on this hidden skin disease. Acta Derm Venereol. 2011;91(1):5–11.CrossRefPubMed Meeuwis KA, de Hullu JA, Massuger LF, van de Kerkhof PC, van Rossum MM. Genital psoriasis: a systematic literature review on this hidden skin disease. Acta Derm Venereol. 2011;91(1):5–11.CrossRefPubMed
3.
go back to reference Ryan C, Sadlier M, De Vol E, et al. Genital psoriasis is associated with significant impairment in quality of life and sexual functioning. J Am Acad Dermatol. 2015;72(6):978–83.CrossRefPubMed Ryan C, Sadlier M, De Vol E, et al. Genital psoriasis is associated with significant impairment in quality of life and sexual functioning. J Am Acad Dermatol. 2015;72(6):978–83.CrossRefPubMed
4.
go back to reference Meeuwis KA, de Hullu JA, van de Nieuwenhof HP, et al. Quality of life and sexual health in patients with genital psoriasis. Br J Dermatol. 2011;164(6):1247–55.CrossRefPubMed Meeuwis KA, de Hullu JA, van de Nieuwenhof HP, et al. Quality of life and sexual health in patients with genital psoriasis. Br J Dermatol. 2011;164(6):1247–55.CrossRefPubMed
5.
go back to reference Zamirska A, Reich A, Berny-Moreno J, Salomon J, Szepietowski JC. Vulvar pruritus and burning sensation in women with psoriasis. Acta Derm Venereol. 2008;88(2):132–5.CrossRefPubMed Zamirska A, Reich A, Berny-Moreno J, Salomon J, Szepietowski JC. Vulvar pruritus and burning sensation in women with psoriasis. Acta Derm Venereol. 2008;88(2):132–5.CrossRefPubMed
6.
go back to reference Gupta MA, Gupta AK. Psoriasis and sex: a study of moderately to severely affected patients. Int J Dermatol. 1997;36(4):259–62.CrossRefPubMed Gupta MA, Gupta AK. Psoriasis and sex: a study of moderately to severely affected patients. Int J Dermatol. 1997;36(4):259–62.CrossRefPubMed
7.
go back to reference Meeuwis KA, de Hullu JA, IntHout J, et al. Genital psoriasis awareness program: physical and psychological care for patients with genital psoriasis. Acta Derm Venereol. 2015;95(2):211–6.CrossRefPubMed Meeuwis KA, de Hullu JA, IntHout J, et al. Genital psoriasis awareness program: physical and psychological care for patients with genital psoriasis. Acta Derm Venereol. 2015;95(2):211–6.CrossRefPubMed
8.
go back to reference Menter A, Korman NJ, Elmets CA, et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: section 6. Guidelines of care for the treatment of psoriasis and psoriatic arthritis: case-based presentations and evidence-based conclusions. J Am Acad Dermatol. 2011;65(1):137–74.CrossRefPubMed Menter A, Korman NJ, Elmets CA, et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: section 6. Guidelines of care for the treatment of psoriasis and psoriatic arthritis: case-based presentations and evidence-based conclusions. J Am Acad Dermatol. 2011;65(1):137–74.CrossRefPubMed
9.
10.
go back to reference Andreassi L, Bilenchi R. Non-infectious inflammatory genital lesions. Clin Dermatol. 2014;32(2):307–14.CrossRefPubMed Andreassi L, Bilenchi R. Non-infectious inflammatory genital lesions. Clin Dermatol. 2014;32(2):307–14.CrossRefPubMed
11.
go back to reference Meeuwis KA, van de Kerkhof PC, Massuger LF, de Hullu JA, van Rossum MM. Patients’ experience of psoriasis in the genital area. Dermatology. 2012;224(3):271–6.CrossRefPubMed Meeuwis KA, van de Kerkhof PC, Massuger LF, de Hullu JA, van Rossum MM. Patients’ experience of psoriasis in the genital area. Dermatology. 2012;224(3):271–6.CrossRefPubMed
12.
go back to reference Bissonnette R, Nigen S, Bolduc C. Efficacy and tolerability of topical tacrolimus ointment for the treatment of male genital psoriasis. J Cutan Med Surg. 2008;12(5):230–4.CrossRefPubMed Bissonnette R, Nigen S, Bolduc C. Efficacy and tolerability of topical tacrolimus ointment for the treatment of male genital psoriasis. J Cutan Med Surg. 2008;12(5):230–4.CrossRefPubMed
13.
go back to reference Jemec GB, Baadsgaard O. Effect of cyclosporine on genital psoriasis and lichen planus. J Am Acad Dermatol. 1993;29(6):1048–9.CrossRefPubMed Jemec GB, Baadsgaard O. Effect of cyclosporine on genital psoriasis and lichen planus. J Am Acad Dermatol. 1993;29(6):1048–9.CrossRefPubMed
14.
go back to reference Rallis E, Nasiopoulou A, Kouskoukis C, et al. Successful treatment of genital and facial psoriasis with tacrolimus ointment 0.1%. Drugs Exp Clin Res. 2005;31(4):141–5.PubMed Rallis E, Nasiopoulou A, Kouskoukis C, et al. Successful treatment of genital and facial psoriasis with tacrolimus ointment 0.1%. Drugs Exp Clin Res. 2005;31(4):141–5.PubMed
15.
go back to reference Feldman SR, Krueger GG. Psoriasis assessment tools in clinical trials. Ann Rheum Dis. 2005;64(2):ii65–8 (discussion ii69-73).PubMedPubMedCentral Feldman SR, Krueger GG. Psoriasis assessment tools in clinical trials. Ann Rheum Dis. 2005;64(2):ii65–8 (discussion ii69-73).PubMedPubMedCentral
16.
go back to reference Kitchen H, Cordingley L, Young H, Griffiths CE, Bundy C. Patient-reported outcome measures in psoriasis: the good, the bad and the missing! Br J Dermatol. 2015;172(5):1210–21.CrossRefPubMed Kitchen H, Cordingley L, Young H, Griffiths CE, Bundy C. Patient-reported outcome measures in psoriasis: the good, the bad and the missing! Br J Dermatol. 2015;172(5):1210–21.CrossRefPubMed
17.
go back to reference Rosen R, Brown C, Heiman J, et al. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther. 2000;26(2):191–208.CrossRefPubMed Rosen R, Brown C, Heiman J, et al. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther. 2000;26(2):191–208.CrossRefPubMed
18.
go back to reference ter Kuile MM, Brauer M, Laan E. The Female Sexual Function Index (FSFI) and the Female Sexual Distress Scale (FSDS): psychometric properties within a Dutch population. J Sex Marital Ther. 2006;32(4):289–304.CrossRefPubMed ter Kuile MM, Brauer M, Laan E. The Female Sexual Function Index (FSFI) and the Female Sexual Distress Scale (FSDS): psychometric properties within a Dutch population. J Sex Marital Ther. 2006;32(4):289–304.CrossRefPubMed
19.
go back to reference Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A. The International Index of Erectile Function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology. 1997;49(6):822–30.CrossRefPubMed Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A. The International Index of Erectile Function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology. 1997;49(6):822–30.CrossRefPubMed
20.
go back to reference Derogatis LR, Rosen R, Leiblum S, Burnett A, Heiman J. The Female Sexual Distress Scale (FSDS): initial validation of a standardized scale for assessment of sexually related personal distress in women. J Sex Marital Ther. 2002;28(4):317–30.CrossRefPubMed Derogatis LR, Rosen R, Leiblum S, Burnett A, Heiman J. The Female Sexual Distress Scale (FSDS): initial validation of a standardized scale for assessment of sexually related personal distress in women. J Sex Marital Ther. 2002;28(4):317–30.CrossRefPubMed
21.
go back to reference Abraham L, Symonds T, Morris MF. Psychometric validation of a sexual quality of life questionnaire for use in men with premature ejaculation or erectile dysfunction. J Sex Med. 2008;5(3):595–601.CrossRefPubMed Abraham L, Symonds T, Morris MF. Psychometric validation of a sexual quality of life questionnaire for use in men with premature ejaculation or erectile dysfunction. J Sex Med. 2008;5(3):595–601.CrossRefPubMed
22.
go back to reference DeRogatis LR. Assessment of sexual function/dysfunction via patient reported outcomes. Int J Impot Res. 2008;20(1):35–44.CrossRefPubMed DeRogatis LR. Assessment of sexual function/dysfunction via patient reported outcomes. Int J Impot Res. 2008;20(1):35–44.CrossRefPubMed
23.
go back to reference Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210–6.CrossRefPubMed Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210–6.CrossRefPubMed
25.
go back to reference Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2—assessing respondent understanding. Value Health. 2011;14(8):978–88.CrossRefPubMed Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2—assessing respondent understanding. Value Health. 2011;14(8):978–88.CrossRefPubMed
26.
go back to reference Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 1—eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77.CrossRefPubMed Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 1—eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77.CrossRefPubMed
27.
go back to reference Rothman M, Burke L, Erickson P, Leidy NK, Patrick DL, Petrie CD. Use of existing patient-reported outcome (PRO) instruments and their modification: the ISPOR Good Research Practices for Evaluating and Documenting Content Validity for the Use of Existing Instruments and Their Modification PRO Task Force report. Value Health. 2009;12(8):1075–83.CrossRefPubMed Rothman M, Burke L, Erickson P, Leidy NK, Patrick DL, Petrie CD. Use of existing patient-reported outcome (PRO) instruments and their modification: the ISPOR Good Research Practices for Evaluating and Documenting Content Validity for the Use of Existing Instruments and Their Modification PRO Task Force report. Value Health. 2009;12(8):1075–83.CrossRefPubMed
Metadata
Title
The Development of the Genital Psoriasis Sexual Frequency Questionnaire (GenPs-SFQ) to Assess the Impact of Genital Psoriasis on Sexual Health
Authors
Alice B. Gottlieb
Brian Kirby
Caitriona Ryan
April N. Naegeli
Russel Burge
Alison Potts Bleakman
Milena D. Anatchkova
Jennifer Cather
Publication date
01-03-2018
Publisher
Springer Healthcare
Published in
Dermatology and Therapy / Issue 1/2018
Print ISSN: 2193-8210
Electronic ISSN: 2190-9172
DOI
https://doi.org/10.1007/s13555-017-0212-3

Other articles of this Issue 1/2018

Dermatology and Therapy 1/2018 Go to the issue