The impact of genital psoriasis on quality of life: a systematic review

Introduction

Psoriasis vulgaris is a chronic immune-mediated systemic inflammatory disease affecting 2%–3% of the US population.^1,2 Psoriasis is often associated with scaly, well-demarcated papules and plaques that may appear anywhere on the body.³ Up to 63% of adult psoriasis patients experience psoriatic lesions in their genital area at least once during their lifetime,⁴ but these localized lesions are often overlooked. Physicians often do not specifically ask about or examine these areas,⁵ and patients may be reluctant to bring up such sensitive topics when not prompted. Thus, almost half of all patients with genital lesions do not discuss their symptoms with their physician^6–8 and may be undertreated.⁷

Although thought to be “just” a skin disease long ago, psoriasis is now well-characterized to have various medical and psychological comorbidities. Patients with psoriasis have increased cardiovascular risk and mortality^9,10 and are more likely to be depressed, anxious, and endorse suicidal ideation than the general population.^11–14 Affected patients often feel stigmatized, have low self-esteem, are embarrassed about their appearance,¹⁵ and suffer from functional, social, and occupational deficits.^16,17 Psoriasis can seriously impair these patients’ dating lives and relationships.¹⁸ Some 72% of psoriasis patients feel uncomfortable about dating and 60% report that this disease has prevented them from pursuing an intimate relationship.¹⁹ More than 80% of patients believe this disease to be misunderstood by the public, and 70% feel limited in their ability to function socially due to their psoriasis.¹⁹ Due to the sensitive location of genital psoriasis lesions, it is likely that this disease has great effects on quality of life, particularly in respect to sexual function.

Psoriasis is well-characterized to diminish quality of life on a variety of measures, but there is increasing interest in characterizing the quality of life impacts of psoriasis on patients with lesions within the genital area. This review evaluates the most current literature regarding the impact that genital psoriasis has on the quality of life of affected patients.

Methods

A literature search using the MEDLINE health literature database was conducted using the terms (“psoriasis”) AND (“penile” OR “penis” OR “genital*” OR “glans” OR “scrotal” OR “scrotum” OR “anal” OR “diaper” OR “napkin” OR “shaft” OR “foreskin” OR “prepuce” OR “perianal” OR “vulva*” OR “labia” OR “labium” OR “groin” OR “preputial” OR “penoscrotal”) AND (“quality”). Two independent reviewers identified the included articles (EY and IS). Articles were included if they included patients with psoriasis affecting the genital area, discussed the quality of life effects or symptoms that these patients experienced due to their disease, and were published prior to April 8, 2018. Studies were excluded if they did not study genital psoriasis, did not discuss the quality of life effects of genital psoriasis, were of foreign language, were duplicates of already-included studies, or were reviews or meta-analyses. Study results were extracted using a standardized data form designed for this review topic.

Quality of life instruments

Dermatology Life Quality Index

The Dermatology Life Quality Index (DLQI) is a 10-item questionnaire validated to evaluate quality of life impact and disability associated with skin disease.²⁰ This questionnaire asks about the impact of skin disease on symptoms, self-perception, shopping, clothing choice, social activity, physical activity, working/studying, personal relationships, sexual functioning, and treatment. Patients indicate how much their skin disease affects their life for each topic, ranging from “not at all” to “very much”. Each response is scored on a scale from 0 to 3 and summed to get a total score out of a maximum 30 points. A greater DLQI score indicates greater quality of life impairment.

Female Sexual Distress Scale

The Female Sexual Distress Scale (FSDS) is a 12-item questionnaire validated to evaluate sexually related personal distress in women.²¹ Patients indicate how often they are bothered by sexual problems, ranging from “never” to “always”. Each response is scored on a scale from 0 to 4 and summed to get a total score out of a maximum 48. A greater FSDS score indicates greater sexual distress, with FSDS scores ≥ 15 indicating sexually related personal distress.

Sexual Quality of Life Questionnaire for Use in Men

The Sexual Quality of Life Questionnaire for Use in Men (SQoL-M) is an 11-item questionnaire validated to evaluate sexual quality of life in men with premature ejaculation or erectile dysfunction.²² Patients indicate their level of agreement with statements regarding thoughts and feelings about their sex life, ranging from “completely disagree” to “completely agree”. Each response is scored on a scale from 1 to 6, then summed, and scaled to a total score out of 100. A greater SQoL-M indicates better sexual quality of life, with men reporting no problems with sexual function having an average SQoL-M score of 87.²²

International Index of Erectile Function

The International Index of Erectile Function (IIEF) is a 15-item questionnaire validated for the assessment of male sexual function within the domains of erectile function, orgasmic function, sexual desire, intercourse satisfaction, and overall satisfaction.²³ Patients indicate the extent to which their sexual function is affected within each of these domains. Each response is scored on a scale from 0 to 5 and summed for a total score out of a maximum 75. An abridged 5-question version, the IIEF-5, can also be used to detect the presence of erectile dysfunction, with IIEF-5 score ≤ 21 indicating erectile dysfunction.²⁴ Lower scores on the IIEF indicate greater impairment of sexual function, whereas lower scores on the IIEF-5 indicate more severe erectile dysfunction.

Dermatologic Intimacy Scale

The Dermatologic Intimacy Scale (DIS) is an 18-item questionnaire used to evaluate the impact of skin disease on intimate relationships.¹⁸ This questionnaire asks patients about various aspects of intimacy, including relationships, comfort with nudity, emotions, and self-perception. Patients indicate the impact of their skin disease on intimacy, ranging from “not at all” to “very much”. Each response is scored on a scale from 0 to 4, then summed to get a total score out of a maximum 72. A greater DIS score indicates greater impairment in intimacy.

Results

A total of 46 relevant citations were identified from our literature search (Figure 1). Of these, 23 articles were selected for further evaluation based on the relevance of their title and abstract. A total of 14 articles examining the quality of life effects of genital psoriasis were ultimately included in this study.

Figure 1 Study selection for quality of life effects of genital psoriasis.

Symptoms

Genital itch was reported by 82%–100% of genital psoriasis patients and was the most commonly reported symptom found in our analysis (Table 1).^6,25,26 Itching occurred at a greater intensity than burning or pain and was reported to be the most bothersome symptom in 40% of patients.²⁵ Another 40% of patients were most bothered by stinging and burning in the genital area, whereas the remaining 20% were most bothered by pain. Genital psoriasis lesions more characteristically presented with intense redness, with less scale or induration.⁷

Table 1 Studies evaluating the symptoms associated with genital psoriasis

Effects on sexual function

Patients with genital psoriasis experience significant impairments in sexual function compared with patients without genital involvement (Table 2). Patients with genital psoriasis experience decreased frequency of intercourse, avoid sexual relationships, and have reduced sexual desire.^7,25–27 These patients are less comfortable with their own nudity, dating, and intimacy compared with patients with psoriasis lesions on nonsensitive areas of their body.¹⁸ Patients experience pain during intercourse or worsening of symptoms after intercourse as well.²⁵ Women in particular experience dyspareunia and are distressed by the impact of genital psoriasis on sexual function compared with men.^7,28 However, this distress improves with treatment targeted toward the genital lesions.²⁸ Males also experience impairments in sexual function,⁷ but the presence of psoriasis lesions in the genital area was not associated with any statistical increase in erectile dysfunction.^29,30

Table 2 Studies evaluating the effects of genital psoriasis on sexual quality of life Abbreviations: NR, not reported; PISS, Psoriasis Internalized Stigma Scale; IIEF-5, International Index of Erectile Function-5; DIS, Dermatologic Intimacy Scale; FSDS, female sexual distress scale; SQoL-M, Sexual quality of life questionnaire for use in men; DLQI, Dermatological Life Quality Index; EQ-VAS, 5 dimension European QoL – visual analog scale; EQ-5D, 5 Dimension European QoL – index score; FSFI, Female Sexual Function Index; RLSS, Relationship and Sexuality Scale; QES, Questionnaire on Experience of Skin Complaints; BDI, Beck’s Depression Index; CES-D, Center for Epidemiologic Studies Depression Scale.

Quality of life effects

Patients with genital psoriasis demonstrate significantly diminished overall quality of life compared with psoriasis patients without genital involvement (Table 3). Patients with genital psoriasis experience impairments in physical activity, personal relationships, work and school, and emotions.²⁵ Although these patients report stigmatization, two studies indicate that patients with genital involvement experience greater feelings of stigmatization than psoriasis patients without genital lesions,^31,32 while one did not.³³ Two other studies demonstrated that patients with genital psoriasis or genital discomfort experienced more depressive symptoms than patients without genital symptoms.^6,26

Table 3 Studies evaluating the effects of genital psoriasis on overall quality of life Abbreviations: PISS, Psoriasis Internalized Stigma Scale; IIEF-5, International Index of Erectile Function-5; DIS, Dermatologic Intimacy Scale; FSDS, female sexual distress scale; SQoL-M, Sexual quality of life questionnaire for use in men; DLQI, Dermatological Life Quality Index; EQ-VAS, 5 dimension European QoL – visual analog scale; EQ-5D, 5 Dimension European QoL – index score; FSFI, Female Sexual Function Index; RLSS, Relationship and Sexuality Scale; QES, Questionnaire on Experience of Skin Complaints; BDI, Beck’s Depression Index; CES-D, Center for Epidemiologic Studies Depression Scale.

Discussion

A number of studies have begun to characterize the quality of life impact of genital psoriasis, but these studies use various different quality of life instruments to capture this impact. Existing studies have found that genital psoriasis diminishes quality of life in various domains, particularly in respect to sexual function and distress (Table 2). Women in particular are distressed about genital lesions. Genital psoriasis patients experience frequent itching, burning, and stinging (Table 1), which can interfere with personal and sexual relationships. The quality of life impact of genital psoriasis is serious, and these patients are more depressed than their counterparts without genital involvement, who are already more depressed than the general healthy population (Table 3).¹³ However, more controlled studies are needed to better understand the full impact that genital psoriasis has on quality of life.

The use of varying quality of life instruments does not allow for comparison of these studies and may introduce a source of bias in existing analyzes. Patients are often reluctant to discuss genital issues with their physicians and may be too embarrassed to answer fully and completely about genital symptoms or sexual function in certain contexts.³⁴ All 20 patients in the study by Cather et al²⁵ preferred to be interviewed over the telephone rather than face-to-face, which the authors speculated to be possibly due to embarrassment or discomfort about discussing these sensitive topics. Thus, instruments not designed or validated to investigate quality of life impairments in this specific population of patients may be prone to misinterpretation and may not capture the true effects of genital psoriasis.

Validated instruments to measure quality of life in patients with scalp and nail psoriasis exist,^35,36 but no such instruments have been validated yet for genital psoriasis. However, outcome measure scales are currently being developed to allow for better characterization of the quality of life impact that genital psoriasis has on patients’ lives.^37,38 These instruments may allow researchers and clinicians to better understand how different treatments impact quality of life in patients in clinical trials, an area where high-quality evidence is currently lacking.³⁹ Genital psoriasis is uniquely challenging to treat because of the sensitivity and high absorption of topical agents in this area,⁴⁰ so further studies using validated instruments are needed to assess the efficacy and safety of available therapies for genital psoriasis.

Affected body surface area has historically been used in the clinical setting to evaluate whether patients should be started on systemic treatment, but this paradigm has begun to fall out of favor. Localized psoriasis, such as involvement of the genitals, can significantly impair patients physically, socially, and emotionally, even to the point of debilitating depression. Patients with significant quality of life deficits due to skin disease are recommended to be started on systemic treatment,^41,42 even without diffuse cutaneous involvement.

Unfortunately, genital psoriasis remains undertreated in the vast majority of patients. Up to two-thirds of genital psoriasis patients have never used treatment for their genital lesions, let alone systemic treatment, and almost half have never discussed the presence of genital lesions with their physician.⁷ Even up to 40% of patients with severe genital psoriasis lesions did not discuss these issues with their physician, indicating that feelings of stigmatization, shyness, or fear of judgment may prevent patients from inquiring about these problems during their healthcare visits.⁷ Only a quarter of genital psoriasis patients believe that their physicians paid enough attention to possible sexual problems, despite the evidence that all types of psoriasis affect sexual relationships and function.^5,19

Because of the taboo nature of genital skin disease and sexual impairment, physicians should take a proactive approach and ask their psoriasis patients about symptoms involving the genital area. Quality of life impairment due to genital lesions can be improved with targeted treatment, so early detection of these effects may help prevent further functional and social deficits secondary to skin disease.²⁸ The development of validated quality of life instruments for genital psoriasis is a step in the right direction toward helping clinicians to assess these impacts more easily and may help increase our understanding of the efficacy of various treatments for this difficult disease.³⁸ Genital psoriasis is a burdensome skin condition that significantly diminishes psychosocial and sexual health, and increased awareness of this unmet need is needed to properly care for these patients.

Disclosure

WL was funded in part by grants from the National Institutes of Health (R01AR065174, U01AI119125). JK is an advisor/consultant/speaker for Abbott, Amgen, Astellas, Celgene, Janssen, Galderma, Eli-Lilly, Leo Pharma, Novartis, Pfizer/Anacor, and Strata Skin Science. The authors report no other conflicts of interest in this work.

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