Peter J Lynch
Rick was kissing his way from my shoulder down my arm.
I could feel his lips hovering above the crease in my arm.
I waited but he didn’t continue. “Um, Ella,” he said at last.
I opened my eyes. He was staring at the crease.... “What is it?” “Psoriasis. I had it once when I was thirteen.” Rick looked at it, then leaned over and kissed my eyelids shut. When I opened my eyes again I just caught a flicker of distaste cross his face.1
The adverse impact of disease affects society primarily in terms of economic cost2 and affects individuals primarily in terms of physical, psychologic, social, and sexual function. The impact of disease in these four areas is collectively known as impact on quality of life3,4 (see Chapter 2.4 of this book). In the past, it was thought that physician-assessed severity of disease would accurately measure the effect of a disease on a patient’s quality of life. It was also thought that physician assessment would correlate well with patient assessment of impact on his or her quality of life. Unfortunately, objective assessment of disease severity correlates very poorly with the patient’s own perception of disease impact, and, for that reason, patient-provided data represent the main source for quality of life assessment5 (see Chapter 11.2). Thus, quality of life is generally measured through the use of questionnaire surveys provided to individual patients. This approach allows patients, rather than just their care providers, to provide input on what the presence of disease means to them.4
Generic assessment of quality of life considers all types of disease (infections, malignancy, etc.) and disease in all types of organs.
This approach, for example, would allow the effect of a skin disease on quality of life to be compared to the effect of a pulmonary disease. In order to keep the surveys short and simple, the amount of detail that can be collected particular to any one disease is necessarily limited. Moreover the results obtained depend greatly on the group surveyed. Thus, in an underdeveloped country, skin disease may seem unimportant compared to gastrointestinal disease.6,7 On the other hand, in the affluent, appearance-obsessed Western world, the effect of skin disease might be viewed as much more problematic.8 The most widely used generic survey instrument is the 36-item, short-form survey of health status (Medical Outcomes Study). This survey is designed for use in clinical practice and research and includes a multi-item scale assessing the following: (1) limitations in physical activities because of health problems; (2) limitations in social activities because of physical or emotional problems; (3) limitations in usual role activities because of physical health problems; (4) bodily pain; (5) general mental health (psychologic distress and well-being); (6) limitations in usual role activities because of emotional problems; (7) vitality (energy and fatigue); and (8) general health perceptions.9 It has been used to study the effect of acne, psoriasis, atopic dermatitis, and hand dermatitis on quality of life.10
Assessment specific to a single discipline retrieves much more data pertinent to a given disease and thus allows excellent comparison among diseases referable to that discipline. Several instruments have been developed to assess quality of life for patients with dermatologic disease.4 The first, and most widely used, is the Dermatology Life Quality Index, developed in 1994 by Findlay and Khan.11 It is a short, 10-question questionnaire. Importantly for the purposes of this chapter, question 9 specifically inquires about the effect of disease on sexual function. Since each of the 10 questions can be answered with four degrees of effect (not at all, a little, a lot, very much), the maximum Dermatology Life Quality Index score is 40 points - the higher the score, the greater the impairment in quality of life. Patients with skin disease generally have scores between 5 and 20 points.11
A second questionnaire, Skindex, was developed in 1996.5 This was a 61-item survey that was shortened the following year to 29 items (Skindex-29).12 Two items regarding sexuality are included. An even shorter version, Skindex-16, was developed in 2001.13 Skindex has been used to assess only a few dermatologic problems. Two other survey instruments for dermatologic problems have been formulated, the Dermatology-Specific Quality of Life14 and the Dermatology Quality of Life scales.15 Neither has been used for comparative purposes.
Multiple studies have employed instruments developed for the sole purpose of evaluating either a single disease or a limited group of closely related diseases (e.g., Scalpdex). These provide very detailed information, but, because they are formulated specifically for each disease, they cannot be used to compare the effect on quality of life among various diseases. They are used primarily in therapeutic trials to measure the effect of treatment on disease severity and patients’ quality of life.
The general impact of skin disease on quality of life and sexuality
Skin disease is ubiquitous and is associated with appreciable impact on the lives of those afflicted. In 1979, dermatologic examination of over 20 000 unselected American individuals found “significant” skin problems in about one-third of all those examined.16 One-third of these (about 10% of the total population) described some social handicap as a result of their skin disease. A more recent survey of over 18 000 Norwegian adults reported a 25% prevalence rate for self-reported skin problems.17 In this survey, the odds ratio for the presence of depression in those with skin problems was impressively high at 2.26. Finally, a survey of 10 000 French households revealed a 43%, 2-year incidence of self-reported skin disease. More than half of these patients indicated that their skin problems adversely affected their daily lives.18
The published data on the impact of skin disease in the specific area of sexual function are extremely limited.19 However, in spite of the paucity of data, common sense tells us that any disease affecting the appearance, touch, and/or odor of a body is highly likely to cause anxiety, depression, diminution of self-image, attenuation of self-worth, and difficulty in social interaction. This, in turn, will surely lead to some degree of sexual dysfunction whether it has been measured or not.
The impact of individual dermatologic disorders on quality of life and sexual function
Most dermatologic disorders have an adverse effect on appearance, touch, and/or odor, and thus are likely to have an impact on sexual function. Not surprisingly, the most important and best studied of these conditions (genital warts, genital herpes, lichen sclerosus, and erosive lichen planus) directly affect the genitalia and are often limited to that site. These diseases are discussed in detail in Chapter 12.2 and will not be covered here. Instead, I will review six other conditions that either do not directly involve the genitalia or are not confined solely to the genitalia. The effect of these disorders on sexuality is more indirect and in many instances has not been well studied. Thus, for some disorders, a putative effect on sexual function has to be derived from data on disease effect in other closely related areas such as social and psychologic function. Information regarding the effect of additional skin diseases on quality of life can be found elsewhere.4,11,20,21
The prevalence of acne in young people is about 90% in males and 80% in females. After age 25, gender predominance switches to a prevalence of approximately 20% in women and 8% in men. Mild acne consists of open comedones (“blackheads”) and small, skin-colored papules (“closed comedones”) confined to the face. As severity increases, red papules and white-topped pustules appear. In very severe acne, red nodules and cysts are intermingled with numerous inflammatory papules. These may be located on the upper trunk as well as on the face (Fig. 16.3.1). The prevalence of acne, and possibly its severity, are increased in patients with polycystic ovarian disease, adrenal hyperplasia, and other conditions that affect the hormonal milieu.
Mild acne is treated with topically applied benzoyl peroxide, antibiotics, and retinoids. Orally administered antibiotics (tetracycline, erythromycin, doxycycline, or minocycline) are added in instances of moderate severity. Severe acne requires orally administered antiandrogens, such as oral contraceptives, and retinoids, such as isotretinoin.
Quality of life: social, psychologic, and sexual aspects
Probably because of sensitivity regarding sexual issues in adolescents and their families, the available quality of life data do not contain information on sexual function. What the data do indicate is that acne has a profound effect on social and psychologic function. One study of teenagers demonstrated that 58% were dissatisfied with their facial appearance and that this dissatisfaction correlated directly with feelings of embarrassment and social inhibition.22 Another study indicated that girls have higher levels of emotional and behavioral dysfunction than boys.23 Several studies found that the detrimental effect on function and emotion in patients with acne was as great as for patients with psoriasis.24 It has also been shown that the effect of acne on psychologic and emotional function was as great for patients with acne as it was for patients with serious systemic disorders such as chronic disabling asthma, epilepsy, diabetes, and arthritis.25 Similarly, Yazici et al. demonstrated that 26% and 30% of acne patients, versus 0% and 7% of controls, had significant anxiety and depression.26 While no study has reported directly on sexual function, the severe effect of acne on social and psychologic function strongly suggests that sexual problems are present in many, if not most, patients with moderate to severe acne.
Figure 16.3.1. Cystic acne of the back. This is an example of how severe acne can be. Lesions are in various stages of development. Some are boil-like nodules, some are draining sinuses, and others are resolving with scar formation.
Female androgenetic alopecia
Female androgenetic alopecia (female pattern hair loss) is the counterpart to androgenetic alopecia in men. Hair loss occurs less commonly (and is usually less severe) in women than in men. Female androgenetic alopecia occurs in about 15% of premenopausal and 40% of postmenopausal women. The hair loss develops insidiously, sometimes diffusely, but most often the vertex is predominantly affected. No inflammation is found, but hair shafts are minaturized and the ostia of hair follicles gradually disappear. Genetic factors (both paternal and maternal) and sex hormones are important. However, as is also true for men, most women with female androgenetic alopecia have normal levels of sex hormones, and there is only little or no response to antiandrogen therapy. The use of topical minoxidil (2% or 5%) leads to partial, but clinically important, regrowth in about a quarter of women; the others usually note a decrease in the rate of hair loss.
Quality of life: social, psychologic, and sexual aspects
Much nonmedical literature (e.g., the biblical story of Samson and Delilah), and common sense, suggest that the presence of normal scalp hair is important for social function. The significance of hair loss in terms of quality of life has been well studied in men; much less is known about the effect of this disease on women. Cash et al. investigated 96 women with female androgenetic alopecia and compared their psychologic function with 60 balding men and 56 control women.27 Women with female androgenetic alopecia, when compared both to the men and the female controls, possessed a more negative body image and reported higher social anxiety, lower self-esteem, and decreased life satisfaction. In another study, van der Donk et al.28 found that the degree of psychologic dysfunction in women with female androgenetic alopecia was similar to that in patients with acne, psoriasis, and eczema. Similarly, Williamson et al.29 and Schmidt et al.30 also found that the decrease in quality of life in women was approximately the same as occurred in women with psoriasis. In addition, Schmidt et al.30 noted that women who perceived their hair loss as severe (but for whom medical assessment revealed no visible loss) had psychologic dysfunction severe enough to approach a diagnosis of dysmor- phophobia (body dysmorphic syndrome). Dolte et al. reported that 50% of women with female androgenetic alopecia had problematic interaction with those of the opposite sex.31 One small study noted that, of 32 patients with female androgenetic alopecia, seven had severe, long-standing marital and sexual problems.32
Vitiligo is an acquired depigmentation of the skin affecting 1-2% of the population. The patches of vitiligo are bright white with sharp demarcation from the adjacent normal skin. There is no inflammation, scale, or textural change. In the most common form of vitiligo, depigmentation involves the face and hands (Fig. 16.3.2). Pigment loss also occurs in the axillae and anogenital region in about 40% of these patients. Genetic factors and autoimmune dysfunction are important in the pathophysiology of vitiligo, which is slowly progressive, but it is uncommon for more than 20-25% of the skin to become depigmented. Topically applied steroids and calcineurin inhibitors are sometimes effective. Ultraviolet light therapy can be tried, but cosmetically pleasing results are unlikely to be achieved. For most patients, the application of skin dyes, “quick-tanning” agents, or pigmented cosmetic cover-up products represents the best approach.
Quality of life: social, psychologic, and sexual aspects
One study demonstrated that vitiligo patients scored lower on self-esteem than did matched controls.33 Two newer studies34,35 showed only a moderate effect on quality of life, less than that seen in acne, hair loss, atopic dermatitis, and psoriasis. However, a study from India, where vitiligo has tremendous social and religious meaning, reported a more marked decrement in quality of life.36 A more recent study demonstrated dysfunction in the “emotions” and “functioning” domains.37 Only one study has specifically examined the effect of vitiligo on sexual function.38 In it, questionnaire results from 158 respondents indicated that 25% of the patients believed that their vitiligo interfered with their sexual relationships. Interestingly, of those adversely affected, about 50% indicated that the difficulty was due to their own embarrassment, and only 13% felt that the problem was due to their partner’s reaction. Not surprisingly, sexual dysfunction correlated highly with low self-esteem.
Figure 16.3.2. Vitiligo in an African-American woman. The significant color abnormalities on the dorsal hands make all types of social interactions problematic.
Hidradenitis suppurativa is a sterile, inflammatory folliculitis involving only those hair follicles with attached apocrine sweat glands. The prevalence rate is 0.5—1.0%, and it is more common in women, especially those of African-American background, and in those who are overweight. Tender red papules appear along the milk line, most lesions occurring in axillary, mammary, and anogenital sites (Fig. 16.3.3). The papules characteristically enlarge to form painful, boil-like nodules that often break down and drain purulent fluid. Most patients develop only a few lesions each month, but some may have dozens of lesions at a time. Lesions occurring in the anogenital region may be accompanied by edema and distortion of the genitalia. The pathophysiology is analogous to that of cystic acne. Genetics and hormonal factors are important, but levels of sex hormones are usually normal. Mild cases are treated as for cystic acne. More severe cases require surgical excision of involved tissue. Liposuction to remove, and laser therapy to destroy, the apocrine gland-related follicles are sometimes used. Orally administered retinoids and oral contraceptives, in contrast to their usefulness in acne, are of little help.
Figure 16.3.3. Hidradenitis suppurativa of the upper inner thigh and labium majus. The labium majus is red, painful, and swollen. The intensity of red color is somewhat obscured by the natural dark pigmentation in this African-American woman. An inflamed nodule on the upper, inner thigh has broken down and is draining pus.
Quality of life: social, psychologic, and sexual aspects
Involvement of the breasts and anogenital region with unsightly, odorous, painful, draining lesions will certainly disrupt quality of life. However, only two studies on quality of life have been published. In the first, involving 98 women, the mean Dermatology Life Quality Index score was 8.9, patients expressing modest to moderate concern regarding social interaction with their partners, friends, and relatives.39 This score is among the highest (indicating greater decrement in quality of life) reported for the 30 dermatologic diseases that have been studied with this instrument.11 In the second study, inquiry was made about the effect of hidradenitis on sexuality; 26 of 58 women (45%) indicated that their disease adversely affected sexual function.40
Psoriasis, which has a prevalence rate of approximately 1—2.5%, can begin at any age, but onset peaks in young adult life. In plaque-type psoriasis, red, scaling plaques most frequently develop on the knees, elbows, scalp, umbilicus, and gluteal cleft. Involvement of the external genitalia is fairly common, occurring in 20—30% of patients with moderate or severe psoriasis (Fig. 16.3.4). Fingernails and toenails are often dystrophic, and arthritis of mild or moderate severity sometimes occurs. Genetics and autoimmune dysfunction are important in the pathophysiology. Topically applied, mid- to high-potency corticosteroids are the mainstay of therapy. Topical retinoids, calci- potriol, and the calcineurin blockers (tacrolimus and pimecrolimus) may be added. Natural sunlight and ultraviolet light, especially in conjunction with oral psoralens and ultraviolet A therapy, are a widely used and effective treatment for psoriasis. Patients with severe disease may require systemically administered methotrexate, cyclosporine, or other agents.
Quality of life: social, psychologic, and sexual aspects
The lesions of psoriasis frequently occur in sensitive areas such as the scalp, hands, and genitalia. These are associated with shedding of scale, roughness on palpation, and malodor. Thus, it is not surprising that patients with psoriasis experience very poor, health-related quality of life. The problems of living with psoriasis have been poignantly described by John Updike. He has not only masterfully detailed his own personal distress41 but has also created outstanding fictional depictions of individuals with psoriasis.
Many general reviews of quality of life in psoriasis have been published,42-44 and these contain a few pertinent points. First, among approximately 15 studies on quality of life in psoriasis, the range of Dermatology Life Quality Index scores is larger than for any other skin disease.11 This reflects the wide range of assessed and perceived severity. In these studies, the median score is about 12, placing psoriasis among the worst two or three common skin problems.11 Second, in a study using the 36-item, short-form survey, the quality of life for psoriasis was found to be decreased to the same degree as for patients with cancer, arthritis, hypertension, diabetes, and depression.44 For most dermatologic problems, impairment of quality of life is more severe in women than in men. But psoriasis seems to affect both sexes equally.45
Figure 16.3.4. Psoriasis of the mons pubis and labia majora. The sharp margination and typical large silver-white scale of the involved tissue help to differentiate this disease from atopic dermatitis.
A number of studies have examined the impact of psoriasis on sexual function. In 1988, Ramsay and O’Reagan surveyed 104 patients and found that 50% of the respondents affirmatively answered the question, “Do you feel having psoriasis has inhibited your sexual relationships?”46 Of note, 65% of those experiencing sexual dysfunction had plaques in the genital area compared to only 35% of those who were not sexually affected. In 1989, Ginsburg and Link surveyed 100 adult psoriatic patients and found that 70% “agreed”, or “strongly agreed” with the statement, “I feel physically unattractive and sexually undesirable when [my] psoriasis is bad.”47 Moreover, 46% “agreed” or “strongly agreed” with the statement, “When the psoriasis is severe, I am too ashamed to engage in sexual activity.” Finlay and Coles reviewed 369 survey questionnaires in which the question was asked: “Has your psoriasis resulted in sexual difficulties over the last 4 weeks?”48 About 30% of psoriatic patients answered “very much” or “a lot” to this question. Gupta and Gupta reviewed questionnaires completed by 120 hospitalized patients with moderate or severe psoriasis.49 Of these, 41% answered affirmatively to the question, “Do you believe that, since the onset of psoriasis, your sexual activity has declined?” Of those patients reporting a decline in sexual activity, 43% indicated the decline was due to a decrease in their own sexual drive, whereas only 15% believed that the decline was due to a decrease in the sexual drive of their partner.49 In 2001, questionnaires were mailed to the more than 40 000 members of the National Psoriasis Foundation.50 Of those responding, 27% indicated that sexual activities were negatively affected. Finally, in a survey of 599 patients, the effect of psoriasis on sexual function was directly related to the severity of the disease as perceived by the patient.51 Specifically, on a scale of 0 (not at all) to 10 (very much), the impact on sexuality was found to be 1.2, 1.9, and 3.7, respectively, for those with mild, moderate, or severe disease.
Atopic dermatitis (atopic eczema, neurodermatitis) has a prevalence of about 10%. Males and females are involved equally. The characteristic clinical feature is itching, usually described as severe. Nighttime scratching is notably troublesome. Mild disease demonstrates tiny (1—2 mm), follicular, red papules, but consequent scratching results in excoriation, weeping, and crusting. Patients who rub as well as scratch, develop lichenifi- cation (palpable skin thickening and exaggeration of the skin markings).
In children and adolescents, lesions are most often found in the antecubital and popliteal fossae. In adults, lesions occur most frequently on the dorsal feet (men), dorsal hands (women), occiput (women), and the anogenital region (both sexes) (Figs 16.3.5 and 16.3.6). Genetic factors, disordered development of inflammation, and possibly environmental allergens are important in the pathophysiology. Psychologic factors seem to play an adjuvant role in the timing and severity of the disease.
Topically applied lubricants and corticosteroids are sufficient for mild disease. Topically applied calcineurin inhibitors (tacrolimus and pimecrolimus) are used for facial and anogenital lesions. Sedating-type antihistamines (hydroxyzine or doxepin) may be used to control nighttime scratching. Systemically administered corticosteroids or cyclosporine may be necessary, on a short-term basis, for patients with severe disease.
Figure 16.3.5. Atopic dermatitis of the vulva and perivulvar skin. Bright red inflammation is present. The margins of the involved lesions are not as distinct as those in psoriasis.
Figure 16.3.6. Atopic dermatitis of the vulva. Vigorous scratching has damaged the epidermal melanocytes and has led to both hyper- and hypopigmentation.
Quality of life: social, psychologic, and sexual aspects
Six studies have reported Dermatology Life Quality Index scores of 4.1,52 5.5,53 6.6,54 7.3,55 11.0,19 and 12.5.56 An additional study, involving more severely affected, hospitalized patients reported a notably high Dermatology Life Quality Index score of 16.2.57 Three of the above studies compared Dermatology Life Quality Index scores between patients with psoriasis and those with atopic dermatitis. In each instance, the impairment in quality of life was greater for atopic dermatitis.57 Two other studies used instruments other than the Dermatology Life Quality Index. One noted that patients with atopic dermatitis had high anxiety levels.58 The other, using the SF-36 questionnaire, found that patients with atopic dermatitis had significantly greater impairment in mental health than did patients with hypertension, type 2 diabetes, and psoriasis.54
Sexual issues were examined in several studies. Question 9 in the Dermatology Life Quality Index survey asks, “Over the last week, how much has your skin caused any sexual difficulties?” The range of possible answers is 0 (“none”) to 4 (“very much”). In three studies, the mean scores for this question were 0.05, 0.4, and 0.5, indicating only a minor effect.19,53,56 However, Drake et al. noted that nearly 40% of patients responding to question 9 experienced at least some sexual impairment.59 Linnet and Jemec noted sexual problems in many patients with atopic dermatitis and found that these were correlated with the patient’s anxiety levels rather than with physician-assessed severity of disease.58 Two older studies considered patients with atopic dermatitis and psoriasis as a group. Van Dorssen et al. found that about one-third of these grouped patients had sexual problems,60 and Niemeier et al. simply indicated that there was significant sexual impairment.61
From common sense and the quoted quality-of-life studies, we may conclude that skin problems frequently impair self-image and are often accompanied by anxiety and depression. This, in turn, adversely affects perception of sexual attractiveness, reduces libido, and leads to varying degrees of sexual dysfunction. Since so many skin diseases are readily visible, malodorous, and associated with scale and crust, it is likely that dermatologic disorders adversely affect sexual function more often, and more severely, than disease in most other organs. And, because our Western society specifically emphasizes physical appearance in women, the effect on sexuality will likely be more prominent in women than in men.
Importantly, the extent and severity of the skin disease, as determined by health professionals, are not good predictors of decreased quality of life. Moreover, medically achieved improvement in the severity of the disease usually restores only a portion of the patient’s original quality of life. For this reason, we must remember that it is the patient’s perception of quality- of-life impairment that is of utmost importance. Unfortunately, the patient’s perception of his or her disease and its effect on sexual function is rarely considered during the provision of medical care.61 This results in underestimation of quality-of-life impairment and insufficient counseling regarding psychologic and sexual function. This omission represents a serious disservice to our patients.
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