Analysis of literature on sexual health and QoL confirms what people implicitly understand—that having good sexual health or sexual quality of life (SQoL) is integral to having a high QoL [16]. According to Hawkes (1996), our society’s heavy biomedical emphasis on sexuality indicates that we consider healthy sexuality to be synonymous with good health [17]. Since good health is the single most important factor in determining QoL across all age groups [18–20], there is a significant correlation between good sexual health and QoL [21].

The vast majority of studies on sex and QoL have been done on clinical populations with specific pathological conditions in order to understand how those specific conditions affect the patients’ sexual health. Studies on sex and QoL on nonclinical populations (Figure 34-2), or rather on a broader concept of sex and QoL, are sparse in comparison and can often seem outdated, perhaps due to the dynamic nature of the subject itself.

Sexual health is multifactorial. It cannot be measured purely objectively or purely physically, but instead, subjective interpretations of one’s sexual health play an important role in how we understand the quality of one’s sexual health [20, 22, 23]. Given that subjective idealization of sex is heavily influenced by one’s cultural upbringing, cultural context becomes another important factor in our understanding of sex and QoL [24]. For example, the sexual revolution of the 1960s was initiated by the changing economical and geopolitical realm of the preceding decades [25]. Also, the practice and interpretation of sex and QoL in the Medieval period was dictated by the dominant religious culture [26]. Cultures are ever-changing and so are the values of sexual normality associated within a specific culture. It seems prudent to point out that different individuals experience different aspects of the dominant culture, which may distinctively impact each individual’s sexual health and QoL. Therefore, different groups of people vary widely in their interpretation and understanding of good sexual health. Because of this variation caused by the subjectivity of SQoL, it is important to examine how good sexual health differs among people and what the characteristic features of those differences are. Regardless of the differences, the literature draws a common conclusion, which is that good sexual health is positively correlated with QoL.

Sexual health is often perceived as just the ability to have intercourse, but multiple studies point out that it also depends heavily on body image, sexual behavior, reproductive health, different forms of sexual expression [27], and even education level [21]. Such variability involved in understanding sexual health points to the idea that the interplay between physiologic and psychosocial factors is a key element in determining the context in which sexual health can be monitored, determined, measured, or studied. Especially when examining sexual health in a nonclinical population where the decline of sexual health is not pathologically induced, the psychosocial aspects of one’s sexual health must take the central role in furthering our understanding of the relationship between sexual health and QoL. The relationship between sex and QoL among nonclinical populations is harder to grasp than in clinical populations. Their sexual health decline is often gradual, associated with aging [21, 24, 28–31], and in some cases is hidden due to subclinical depression. Furthermore, the lack of a clinical diagnosis makes it harder for these individuals to evaluate their sexual health and thus correlate it to their general QoL.

In most of the studies on sexual health and QoL reviewed in this section, data was collected using validated questionnaires for measuring QoL, such as those created by the World Health Organization (WHO) or variations developed for use in specific populations. Other questionnaires used include the Comprehensive Quality of Life Scale (COMQOL) , the Sexual Knowledge, Experience, and Needs Scale [20], and the Sexual Quality of Life–Female (SQOL-F) questionnaire [13]. In these cases, study participants are asked to use a scale to rate satisfaction with various aspects of their life including sexuality. The WHO questionnaires cover six domains of life including social relationships, psychology, and physical domains [32]. It is within these three domains that sexual health plays a particularly important role and demonstrates a positive correlation with QoL [18]. In Daker-White and Donovan’s studies on heterosexual relationships and QoL, due to the variety of circumstances that effect the testing subjects’ sex and QoL, detailed responses regarding their sexual life, rather than a scale, were recorded and analyzed to reach a conclusion [28]. According to WHO, having standardized questionnaires that can measure QoL is important for helping to determine treatment decisions, fund allocation and policy research, and gain an anthropological understanding of various cultures [32].

To fully understand the relationship between sexual health and QoL among nonclinical populations, first considering clinical populations and their pathological sexual dysfunction can give insights into the nature of normal sexual health. Normal sexual health is dependent on a complex interplay between the physical and psychosocial facets of an individual, while sexual dysfunction is contingent upon a person’s previous sexual experiences before they started noticing problems. The American Psychiatric Association places an emphasis on requiring “clinically significant distress” to define sexual dysfunction [33], meaning it relies on a subjective interpretation. In addition, WHO categorizes sexual health in the social domain rather than in the physical domain [28, 32], meaning it is subjected to environmental influences. Hence, we must be aware of the different psychosocial reasons that cause distress and be cautious about how we use the term sexual dysfunction [34].

In studies conducted by Daker-White and Donovan [28] on heterosexual British hospital patients experiencing the sexual dysfunction due to physical causes, distinct differences between males and females emerged in terms of what constitutes as having “normal” sexual health. In general, the interviewees’ descriptions of what distressed them most about their sexual health showed that for women normal sexual health means having the ability to fulfill expected sexual work as someone who is supposed to receive sexual satisfaction, and abnormal sexual health occurs when they have issues related to fulfilling that work. Their inability to fulfill expectations was usually caused by two issues. One was a concern about their physical appearances not being able to stimulate their partners. This indicates the presence of issues related to the quality of the relationship with their sexual partners or their confidence level, which is influenced by societal norms and psychological conflicts. The second cause was physical pain during intercourse. In contrast, for men, sexual dysfunction was distressing mainly due to their inability to perform the expected work of sex. The “work” was to perform and accomplish sexual intercourse, and their physical limitations prevented them from satisfying their urges and accomplishing sexual intimacy. In summary, this study points to the notion that female sexual health is more contingent on external influences.

There have been many other studies that examined physical sexual health in male populations. Erectile dysfunction (ED) , premature ejaculation (PE) , and hypogonadism have all been associated with poor QoL in both mental and physical domains [35–37]. Other studies that focused exclusively on females showed that sexual health satisfaction was based on a combination of sexual function, psychological well-being, and strength of their relationship with their partner [38, 39]. Hawton et al. found that among middle aged women with partners, the quality of their marriage had the highest correlation to the frequency of intercourse, orgasm, and sexual satisfaction, while all other factors such as age, gynecological, and psychiatric symptoms made little difference [40]. More reviews of studies on gender differences are discussed within the context of demographic differences.

The impact of psychosocial factors on SQoL is especially pronounced when reviewing sex and QoL studies done in LGBT populations. Sexuality is often described as having three dimensions: sexual attraction, sexual behavior, and sexual identification [52–54]. Sexual attraction and behavior are mostly physically dictated, but sexual identification is largely influenced by the culture and how people define their physical attraction in their own psychosocial context. Sexual identification can become problematic to psychological and general health, SQoL and overall QoL when it is not in agreement with one’s sexual behavior or attraction.

A study that was conducted in the Netherlands with LGBT populations found that homosexual men, but not homosexual women, had lower QoL in various domains of QoL assessments than their heterosexual counterparts [55]. The authors conclude that the differences in QoL between homosexual men and women validate the theory that there are other factors influencing QoL than purely sexual attraction or behavior. A similar finding that sexual behavior alone is not directly linked to QoL was also noted in a study conducted by Horowitz, Weis, and Laflin [56]. In the Netherlands study, homosexual men had less-positive evaluations of their general health, mental health, and emotional health, and they were also assessed to have more comorbid psychiatric conditions than their heterosexual counterparts. It is generally well accepted that such a finding is due to the stigma and discrimination felt by LGBT populations, which creates psychological distresses [57–59] and the eventual demise of general QoL. It is important to point out that low QoL was associated with riskier sexual behavior such as unprotected anal sex [60, 61]. Traeen et al. compared QoL of LGBT college age populations across different countries and showed that in cultures that had a more accepting attitude towards homosexuality, LGBT individuals had better QoL [23]. The article points out that for women living in a culture where homosexuality is more accepted, having sex with another woman can be interpreted as an “expression of self-realization and social competence.” This, as well as the fact that women tend to be better at forming a community for social support [52], may explain the reason why in the Netherlands study, homosexual women did not suffer lower QoL than their heterosexual counterparts. Data from a Norwegian university age population showed that homosexual and bisexual women actually scored higher on the personal growth scale than heterosexual women [23].

So far the concept of how sexual identification relates to QoL has been discussed. But just as straight women were found to have specific physical concerns associated with their SQoL that were different from men, there are physical sexual concerns for homosexual men and women that are different from their straight counterparts. For both gay men and women, the heterosexual assumption of their sexual orientation by the larger society becomes problematic, especially as they seek health care. They can fear rejection of their sexual orientation or have their particular gender orientation–related sexual needs ignored by their caretakers. A study by Rose, Ussher, and Perz on gay and bisexual men with prostate cancer investigates this particular issue. They point out that in current medical practice, support for sexual rehabilitation after prostate cancer surgery focuses solely on restoring men’s erectile function just enough to achieve vaginal intercourse, all while ignoring the alternative anal intercourse practiced by gay and bisexual men where a stiffer erection is often required [62]. One important aspect of anal intercourse and pleasure is also addressed in this study. The notion among many homosexual men that the prostate is “the male G-spot” is completely ignored during prostate cancer treatment, so that this important pleasure center is disregarded as significant to the well-being of the patient following treatment [63].

Waite conducted a study of lesbian women which found that double discrimination due to both female gender and sexual orientation, also referred to as lesbophobia, was found to have a negative impact on QoL. Lesbians are frequently subjected to microaggression by the dominant culture, where comments about them not having children or not having a man, messages that invalidate their lived experiences and identity, position them as inferior or inadequate [64, 65]. It is also clinically relevant to note that more than half of older lesbians are found to have the highest number of risk factors for breast cancer due to their age, in some cases having never had children, and possibly having never breast-fed [66], a pathophysiological perspective often overlooked by healthcare professionals.

Data on socioeconomic factors (SEF) related to sex and QoL are limited, but a few studies provide insight into how they can affect sexual health and QoL. In a study conducted by Aytaç et al. [67] in a male popuation in Massachussetts, it was found that men with blue-collar occupations had a much higher likelihood of developing ED. The author did not investigate if ED had a direct negative effect on their QoL, but as shown in previous studies of sex and QoL in men, having any kind of demise in sexual function can adversely affect SQoL and overall QoL. Although the explanation for this correlation between blue-collar occupations and ED is unclear, the data seems to decline in overal general health as a possible cause. People with low socioeconomic status (SES), specifically those having income lower than $40,000 per year, were twice as likely to experience depression, and populations with low education were more likely to suffer from diabetes and hypertension. It is a well-accepted medical concept that depression, hypertension, and diabetes contribute to sexual dysfunction in men [28, 43, 68]. The Massachusetts study concluded that besides age, occupation had the highest association with ED of any SEF, accounting for 47% of the variance in ED risk. The author interestingly theorized that perhaps the demise of general health and sexual dysfunction in populations with lower SES could be due to the numerous social inequalities—and related levels of stress—they encounter that cannot directly be measured [67].

Similar findings with regard to sexual dysfunction were also noted in studies conducted on other highly stressed populations. Medical residents and students spend long hours working and studying in highly stressed environments with overwhelming responsibilities and lack of free time. It was found that these stressors have a negative effect on sexual function in female populations but not in male populations, and on sexual dissatisfaction in both male and female populations [69]. Such an observation again supports the notion that, first, negative psychosocial factors lower SQoL, and second, that perhaps for women, sexual function and health is more dependent on psychosocial influences than for their male counterparts.

Among women, it is important to note that although relationship status was the most important factor in sexual satisfaction , SES also had a positive influence on the frequency of sex and satisfaction [40]. As suggested by Aytaç et al., low SES is a source of stress, which affects psychosocial function, and this in turn affects SQoL to varying degrees [67].

The interface between sexuality and QoL is an evolving field of study. Our understanding and practice of sex are contexual in that they change with the passage of time and shifting cultural influences such as the economy, belief systems, and science. Griffin’s sociological study [70] on the rapid rise of illegitimacy revealed that the industrial revolution has brought a new sense of sexual freedom that did not exist in the preindustrial era. Currently, as we go through the internet revolution, we are already seeing signs of change in how we define and address sexual health. Searching through a list of peer-reviewed articles found using the keywords internet and sex, there are numerous studies on pathologic internet behavior of sex seeking and viewing of pornography [71–74]. The studies mostly examine risks associated with such behaviors and try to determine the extent of the negative effects internet usage can have on general well-being. As internet usage evolves further, it will be important to study the potential the internet has to help individuals improve their sexual health and QoL. By doing quick “how to” searches on various forums related to sex, there are already signs of some positive impacts of the internet on SQoL. Just as the industrial revolution brought us economic freedom which allowed people to enjoy and practice sex the way they wanted to, the internet revolution is in the process of giving us the informational freedom [75] to be able to identify sexual problems, find out about available remedies, and seek help.

A wide variety of medical conditions, and physical health in general, can impact sexual function to varying degrees, and this in turn can affect sex-related QoL as well as overall QoL (Figure 34-3). Furthermore, this is an area that is often overlooked by clinicians relative to other symptomatic and functional consequences of disease.

It is important to recognize that the impact of medical illness on sexuality and related QoL is multidimensional. For example, Tierney describes multiple etiologies for sexual dysfunction among cancer survivors: (1) direct effects of illness; (2) psychological distress due to illness; (3) treatment for illness; (4) side effects of treatment for illness; (5) psychological distress after treatment; (6) changes in relationships due to illness [76].

These sources of sexual dysfunction can be applied to any medical condition , not just cancer. Notably, they affect QoL at all stages of illness, from onset, to diagnosis, to chronic management, remission, or cure. Furthermore, these sources of sexual dysfunction include psychological and social factors in addition to physical health, demonstrating that patients are best served by clinicians who address not just progression of illness, but associated QoL challenges, those related to sexuality in particular. To that end, this section reviews what is known about relationships between certain categories of medical and surgical illness, sexual function, and QoL.

A review of the literature suggests that sexual dysfunction is more prevalent among people who have hypertension than in controls, with such sexual dysfunction contributing to impaired QoL [77]. Some antihypertensive drugs, including beta-blockers and diuretics, contribute to sexual dysfunction, impairing QoL and leading to treatment non-adherence [77].

For patients undergoing coronary artery bypass grafting (CABG) , the data shows impaired sexuality despite improvements in QoL overall, with one study showing up to 71% of patients reporting no improvement in sexual function post-surgery [78]. Other studies demonstrate increased erectile dysfunction (ED), decreased sexual frequency, and decreased sexual satisfaction overall post-CABG [78]. A study of 66 patients after CABG found that fear of resuming sexual activity was associated with decreased sexual interest and frequency, but there was no association between fear and sexual satisfaction [78].

A study of sexuality and QoL in 39 heart transplant recipients found sexual dysfunction in 61% of participants [11]. The patients with impaired sexual function also reported worse QoL than those without sexual dysfunction in physical domains including general health, physical health, physical functioning, and physical role limitation. Of note, this was despite a lack of any significant differences in mental health or depression in patients with and without sexual dysfunction. Research on left ventricular assist devices has given contradictory results regarding their impact on sexuality and QoL, with fear of damaging the unit during sexual activity emerging as one concern [79].

Sexual dysfunction is common in chronic obstructive pulmonary disease COPD. One study of 90 men with moderate-to-severe COPD found that 74% had at least one problem, most commonly ED (72%) [80]. Still, a lower proportion of men with COPD than in the community said that their QoL was impaired by ED (76% vs. 90%) or loss of libido (58% vs. 65%), which the authors hypothesize may be due to reduced expectations for sexual functioning in the COPD group. At the same time, the groups reported that anorgasmia impaired their QoL at similar rates (77% vs. 73%). ED was independently associated with depressive symptoms and low testosterone in the study, but not with dyspnea or all-cause mortality.

Women with asthma have greater impairments in sexuality and QoL than controls, according to a study of 31 women with asthma aged 18–45 [81]. The women with asthma had impairments in arousal, lubrication, orgasm, sexual satisfaction, and pain compared to controls, although causality remains unclear. Sexual dysfunction was associated with duration of illness in the study, but not with treatment or severity of symptoms. There was also no association between sexuality and severity of symptoms in a study of 55 men and women with asthma and COPD, with the authors suggesting that psychosocial factors such as coping mechanisms and social supports play a role in preserving sexual function [82]. Men with COPD had more sexual dysfunction and more dissatisfaction with sexual activity than women with COPD in the study. Women with asthma had more sexual dysfunction and more dissatisfaction with sexual activity than men with asthma in the study.

The impact of sexuality on QoL in inflammatory bowel disease (IBD) remains understudied, despite a review demonstrating that patients find it a primary concern [83]. The review cites four studies analyzing sexuality and QoL in patients with IBD post-surgery, with results supporting an association between the two variables; it also examines three studies analyzing body image and QoL in patients with IBD post-surgery, with results also suggesting an association. Still, the review found that the most important predictor of QoL in IBD was actually disease severity, while the most important risk factor for sexual dysfunction was not any disease-specific concern, but instead depression, which is common in IBD.

In vitiligo, a condition that is primarily cosmetic, a study of 50 women showed an association between impaired sexuality and QoL, including impairments in genital self-image, in addition to impaired desire, arousal, lubrication, and overall satisfaction [84]. Research on psoriasis also shows that the psychosocial impact, including perception of stigmatization, causes impairments in sexuality and QoL [85]. A study of 354 patients with psoriasis found genital involvement in a majority, which corresponded to even greater impairments in sexuality and QoL than for those without genital involvement; symptoms such as itch, pain, stinging, and dyspareunia contributed [85]. Women with lichen sclerosus were also shown to have impairments in QoL associated with sexual dysfunction, especially dyspareunia due to psychological, anatomical, and dermatological changes caused by the condition [86]. A study of 300 patients with hidradenitis suppurativa found that women suffered worse sexual dysfunction than men, and that sexual dysfunction was associated with impaired QoL in women only [87].

A comparison of subtypes of urinary incontinence in 111 women found that, among them, stress incontinence most impairs sexual function, but that urge incontinence and mixed incontinence cause greater impairments in QoL [88]. A study of 66 couples in which the female partner had stress incontinence showed greater impairments than in controls for both sexual function and QoL (the latter was measured only in the women), including decreases in sexual frequency and satisfaction for both women and men, more avoidance of sex in women, and more ED in men [89]. Still, the study found no association between the impairments in sexual function and QoL. In men , an enlarged prostate can cause lower urinary tract symptoms that impair sexuality and QoL [90]. Numerous options exist for pharmacotherapy and surgical treatment of enlarged prostate, each with different benefits and risks for urinary symptoms, sexuality, and the QoL associated with both domains [90].

A review of the literature shows that age-related vision loss has wide prevalence and significantly impairs QoL, irrespective of the cause of vision loss [91]. However, the degree to which impaired sexuality due to age-related vision loss impairs QoL represents a gap in the literature.

A study of adult onset bilateral sensorineural hearing loss in 76 young and middle-aged men found impaired erectile function, intercourse satisfaction, and overall satisfaction compared to controls, with impaired QoL in the domains of social functioning and physical role difficulty, but not physical functioning, bodily pain, general health perception, vitality, emotional role difficulty, or mental health [92]. The impairments on sexuality were independent of degree of hearing loss, although the study excluded people who had severe hearing loss.

A systematic review of research on hip replacement found an overall improvement in sexual QoL in both functional and psychosocial domains post-surgery, although it did not examine its relation to general QoL [93]. A study of 1082 people with chronic musculoskeletal pain reported impaired sexuality and QoL compared to controls, although people with chronic pain actually reported better satisfaction with partner relationships than controls and their level of pain was not found to be associated with their sexual satisfaction [94]. Sexuality is not routinely part of questionnaires that assess QoL in rheumatic diseases, even though these conditions are widely known to cause sexual dysfunction [95].

A study of 120 people with spinal cord injuries found no association between sexual satisfaction and QoL, though there was an association between relationship satisfaction and QoL [96]. Although less than half of the patients in the study were satisfied with their sex lives, more than three-quarters were satisfied with their overall QoL, which the authors theorize may be due to resignation or shift in priorities after injury. In multiple sclerosis, a study of 6,183 people found that sexual dysfunction significantly impaired mental aspects of health-related QoL and in fact the impairment was much greater than that attributable to disability level, age, gender, or employment status [97]. A study of 70 survivors of stroke showed an association between impairments in libido and QoL, but found that impaired libido was associated with depression, which is common after stroke, rather than functional disability [98]. Another study examining 121 survivors of stroke found an association between impairments in sexuality and health-related QoL, but found that the impaired QoL was a consequence of functional disability [99].

A study of 100 patients who took chemotherapy found that loss of sexual interest was ranked sixth among factors that negatively impact QoL. Subgroup analysis showed that young people ranked it second among factors negatively impacting QoL, that women ranked it higher than men, and that partnered patients ranked it higher than single ones [100]. A different group of 752 cancer survivors also ranked sexual dysfunction sixth among factors that negatively affect their QoL, with over 40% of those surveyed calling it an issue for them [101]. The study found that sexual dysfunction was the only factor negatively affecting QoL that was reported more often among men than women and partnered people over single ones. Additionally, sexual dysfunction was the number one factor negatively affecting QoL noted by survivors of prostate cancer in the sample. Prior research found that, among different types of cancer, sexual problems were most prevalent in survivors of breast, testicular, and prostate cancer [101].

Studies on genital herpes shows that difficulty with sexual relationships and related psychological sequelae (isolation, anxiety, fear of rejection) cause significant negative impact on QoL, but that antiviral therapy has significant beneficial effect on QoL for those with frequent outbreaks [102]. A study of 895 people who had genital warts showed that decreases in QoL were most often due to anxiety and depression (37%), followed by pain and discomfort (26%) [103]. A study of 112 men with chronic hepatitis C infection showed impaired QoL compared to controls. Among men with hepatitis C, QoL was significantly lower for those who had sexual dysfunction compared to those who did not [104]. The study also specifically found that the sexual dysfunction was independent of depression. In a focus group on tuberculosis and QoL, a majority of the six male patients remarked that fatigue from the illness and its treatment resulted in loss of libido or ED, with normal function returning only sometime after completion of treatment [105].

In one study of 237 people living with HIV, psychosocial factors, including satisfaction with sex life, had more impact on health-related QoL than clinical measures [106]. Another study of 1194 people living with HIV found that less sexual activity in middle-aged to older people (ages 50–81) compared to younger ones was the main factor accounting for lower scores in the social domain of QoL for the older group [107]. A review focusing on QoL and antiretroviral therapy in HIV found that some patients attributed sexual dysfunction to their medication, with the QoL impairment contributing to treatment non-adherence [108].

In people with type 1 diabetes, sexual dissatisfaction was shown to be associated with impairments in mental aspects of QoL, while sexual dysfunction and metabolic parameters were not. Of note, sexual dysfunction in women with diabetes has been more strongly associated with anxiety and depression than with diabetes itself [109]. A study of 126 men with type 2 diabetes showed an association between impaired QoL and both low testosterone and ED that was independent of age, body mass index, and hemoglobin A1c, with worse erectile function associated with worse QoL [110]. A study using testosterone in 92 men with type 2 diabetes found improvements in QoL and in all tested domains of sexual function compared to men taking placebo, with greatest benefits in less obese men and men over 60, and reduced benefit in men who also had depression [111].

In people with growth hormone deficiency, arousal and subjective view of body shape were found to be impaired during the transition phase compared to controls, but there was no corresponding impairment in QoL. The impairments in arousal and body shape improved with growth hormone treatment [112]. A review of QoL in adrenal insufficiency was inconclusive as to whether dehydroepiandrosterone sulfate (DHEA-S) replacement therapy in women positively affects sexuality and QoL [113]. In a study of 59 patients with either Graves’ disease or toxic nodular goiter, both groups showed significant improvements in QoL after thyroidectomy. Only the Graves’ disease group had impaired sexuality prior to surgery, which improved after the procedure [114]. Likewise, a study of 143 patients divided into those with Hashimoto’s thyroiditis and those with other benign goiters found significant improvements in QoL for both groups after thyroidectomy. In this case, only the Hashimoto’s thyroiditis patients had impaired sexuality prior to surgery, which improved after the procedure [115].

A study of 95 adults with obesity showed an association between impaired sexuality and QoL, with further associations between sexual dysfunction and body mass index (BMI), waist circumference, psychological distress, obesity-related disability, and female gender [116]. In contrast, another study showed that among 334 obese adults, impaired QoL caused by obesity-related sexual dysfunction had limited importance to men and non-African American women [117].

Impaired sexuality during pregnancy is associated with reduced QoL, with depression as the best predictor of sexual dysfunction, according to a study of 150 pregnant women [118]. Safarinejad et al. found that delivery of the first child by planned caesarean section resulted in greater frequency of intercourse, sexual satisfaction, and QoL in women than other methods (spontaneous vaginal delivery, vaginal delivery with episiotomy, operative vaginal delivery, and emergency caesarean section) at both three and 12 months post-delivery, as well as lower frequency of ED in men over the same period [119].

A study of 144 adults with disorders of sex development (46,XX and 46,XY; both social genders) showed comparable QoL between the chromosomal genders, which in turn were comparable to the general population [120]. The study showed that higher age at initiation of treatment was associated with impaired QoL as an adult, and there was a significant mean difference in QoL between patients with adequate and inadequate sexual performance. Still, sexual performance explained only 4% of variability in QoL; influencing QoL far more were general health (18%), positive feelings (18%), and spirituality, religion, and personal beliefs (18%). Women with Turner’s syndrome have impaired sexual arousal compared to controls and impaired QoL in domains of physical functioning and role physical functioning, according to one small study. However, sexually active and non–sexually active women in the study had comparable levels of QoL [121]. The same study examined 21 women with other congenital hypogonadisms and found impairments in desire, lubrication, orgasm, and pain compared to controls, and impaired QoL in domains of physical functioning and bodily pain. Finally, a study of 32 men with congenital adrenal hyperplasia showed that they were less sexually active than controls, but had similar sexual satisfaction and QoL [122].

The studies reviewed here illustrate the many associations between physical health, sexual health, and a healthy QoL. At the same time, this review shows that effects on QoL differ across conditions and cannot simply be assumed to fit an expected pattern, as evidenced by certain conditions or subpopulations in which sexual function had little or no impact on QoL. Such instances may in some cases represent pockets of resilience that warrant further study. In any event, this serves to underscore the importance of clinical inquiry about a patient’s well-being to guide treatment of medical conditions which affect sexual health, and of further research into this complex three-way relationship so as to inform intervention design and implementation.

As with many other types of illness, people living with a wide variety of psychiatric and substance use disorders experience sexual dysfunctions at a higher rate than the general population. In fact, nearly all psychiatric conditions have been associated with some degree of sexual dysfunction [123 ] (Figure 34-4). Reasons for this are complex and include physiological, psychological, social, and even demographic factors [123]. This impairment in sexual health contributes to additional illness burden in terms of impact on QoL, which for many people with psychiatric conditions is already substantial [2, 124]. Compounding this is the widespread under appreciation of, inattention to, and discomfort with this problem on the part of clinicians [125], creating a missed opportunity to intervene on a treatable problem and therefore improve patients’ overall QoL irrespective of improvement in other aspects of an illness. No less significant in this equation is the well-recognized fact that psychiatric medications can themselves be a cause of sexual dysfunction [123, 125, 126]. This requires astute and nuanced assessments by providers in order to tease out causes and enact appropriate remedies. This section reviews what is known about the relationship between sexual dysfunction and QoL in a number of prevalent psychiatric and substance use disorders and their treatments.

There is evidence for a bidirectional relationship between sexual dysfunction and depression. That is to say, a depressed state can entail or result in sexual impairments and, conversely, impaired sexual functioning can contribute to depression, which could conceivably result in a mutually reinforcing cycle. While causality in this relationship is a matter of some debate, the association itself is well established in both men [127, 128] and women [129]. In a cross-sectional sample of 600 men across four countries, Nicolosi et al. showed that depressive symptoms were more prevalent among men with erectile dysfunction (ED), and that participants with moderate or complete erectile dysfunction were 2.3 times more likely to have a history of diagnosed depression than those without ED. Additionally, frequency of intercourse was associated with degree of satisfaction with sexual life in all age groups; men with ED had a reduced coital frequency; and depressive symptoms were correlated with sexual satisfaction in a linear (or “dose-dependent”) fashion. This led the authors to infer that the link between ED and depression is mediated by reduced sexual activity and dissatisfaction with one’s sexual life, suggesting a causal association [130]. At least two clinical trials have demonstrated that depressive symptom burden was reduced following successful treatment of ED [131, 132]. One such trial included a measure of ED-specific QoL, Erectile Dysfunction Effect on Quality of Life (ED-EQoL) , and found that it also improved with treatment [131]. In the reverse direction, depression has been proposed as one among many potential factors leading to the development of sexual dysfunction [133–135], with one explanation positing depression, anxiety, and other stress reactions as “cognitive interferences” that distract attention from erotic stimuli, inhibiting arousal [135]. Shindel et al. found an association between sexual dysfunction and depression in a cross-sectional sample of 1241 North American female medical students. Specifically, those below a cutoff value on the Female Sexual Function Index (FSFI) designated as having “high risk of female sexual dysfunction” were 2.25 more likely to report depressive symptoms, with the most strongly associated sexual function domains being orgasmic impairments, interference in sex life from stress or lack of a partner, and lower overall life satisfaction (one aspect of QoL). [129]

As in the case of depression and sexual dysfunction, IsHak et al. have pointed out that depressive symptoms and QoL are bidirectionally related: depression can lead to QoL impairment (but is not merely synonymous with it) and vice versa [2]. This makes for an especially complex three-way relationship between depression, sexual functioning and satisfaction, and overall QoL. Adding to this complexity is the fact that serotonergic medications, the most common treatments for depression, frequently and infamously cause sexual side effects [136–140]. Such antidepressant medications include monoamine oxidase inhibitors (MAOIs , e.g., amitriptyline, desipramine), serotonin-selective reuptake inhibitors (SSRIs , e.g., fluoxetine, paroxetine, citalopram), and serotonin-norepinephrine reuptake inhibitors (SNRIs, e.g., duloxetine, venlafaxine) [136, 137, 139], and have been implicated in reduced libido, impaired arousal (vaginal lubrication or penile erection), and orgasmic dysfunctions (delay in or inability to achieve climax) [138, 140]. Sexual side effects are a common cause of nonadherence to antidepressant treatment [137, 139]. Depressed patients therefore often find themselves in the “double bind” of experiencing sexual problems due to their depression, antidepressant medications, or both. The result is that individuals living with depressive disorders often contend with sexual problems, which reduce their QoL, whether or not their depression is “successfully” treated.

Thakura et al. sought to characterize the nature of sexual dysfunctions in Major Depressive Disorder (MDD) and their impact on QoL, specifically enrolling only patients not on antidepressants so as to examine impacts of the disorder itself. There was no comparison group in the study. A majority rural sample of 60 patients with MDD in India completed the Hamilton Rating Scale for Depression (HAM-D), Arizona Sexual Experience Scale (ASEX) assessing sexual interest and function, and the Quality of Life Enjoyment and Satisfaction Questionnaire–Short Form (QLES-Q-SF). Two-thirds of the men and three fourths of the women reported sexual dysfunction. Problems frequently reported by men were low desire (33%) and erectile dysfunction (29%), whereas problems with orgasm and orgasmic satisfaction were about half as common. Female subjects similarly reported low desire (42%) followed by excitement (22%) and vaginal lubrication (19%) problems, and lastly problems with orgasm and orgasmic satisfaction (11% each). HAM-D (depression) scores correlated positively with total ASEX (sexual dysfunction) scores as well as all individual ASEX items except arousal. Meanwhile, subjects with sexual dysfunction (defined categorically based on ASEX scores) reported substantially lower QoL on average than those without sexual dysfunction, with means of 31% and 65% of maximum possible QLES-Q-SF score , respectively. Notably, the mean differences between groups were significant for all QLES-Q-SF items, not only total score, indicating widespread impact of sexual dysfunction on multiple domains of QoL: social, physical, mental, occupational, daily functioning, leisure, financial, overall satisfaction, and overall well-being domains in addition to sexual QoL. In a further analysis, both total HAM-D scores and total ASEX scores correlated negatively with all QoL domains as well as QLES-Q-SF total score. In light of these correlations, and despite the design limitations precluding definitive causal conclusions, the authors proposed the likelihood that “depressive symptoms and sexual problems are linked in a cyclic fashion with one contributing to the other.” On this basis they urged early recognition of sexual dysfunctions in order to guide choice of antidepressant medication and treatment plan, and to prevent progression in illness severity [141]. Returning to the notion that QoL impairment can lead to or prolong depression, it becomes all the more important to address sexual dysfunctions lest they lead to a lower QoL and, in turn, worsening depression.

IsHak et al. analyzed sexual satisfaction and QoL data in patients with MDD before and after treatment with a common SSRI, citalopram. The study examined data from 2280 patients diagnosed with MDD who participated in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) trial , the largest-ever clinical trial of treatments for MDD. Measures of interest were the Quick Inventory of Depressive Symptomatology–Self Report (QIDS-SR) ; Quality of Life Enjoyment and Satisfaction Questionnaire (Q-LES-Q) , a self-reported measure of QoL; and a single item from the Q-LES-Q which queries satisfaction with “sexual drive, interest, and/or performance.” Impaired sexual satisfaction (ISS, based on a score threshold on the sexual satisfaction item) was highly prevalent in this sample before treatment—64% overall—and occurred more frequent in women, whose rate was 67% compared to 59% for men. After 12 weeks of treatment with citalopram, this rate fell to 47% overall, 47% among women, and 48% among men. This paralleled a reduction in depressive symptom scores following treatment, with depression severity increasing the odds of ISS by 13% at pretreatment and 19% at post-treatment. Furthermore, ISS was significantly more prevalent in those who did not achieve remission following treatment than in remitted patients (61% vs. 21%). These findings led to the conclusion that depressive symptoms “outweigh” the sexual side effects associated with citalopram in terms of contribution to ISS, and that this may be related to an increase in libido, boosting the case for SSRI treatment. These finding were consistent with other studies that have shown that sexual dysfunction seemed to be more closely related to depression than side effects of SSRIs or SNRIs [142–145] (although, of note, in one smaller study of 25 subjects taking sertraline or paroxetine, this held true for women but not for men [145]). On the other hand, the same study by IsHak et al. found that among patients whose symptoms remained moderate to severe following treatment, citalopram demonstrated a direct and negative effect on sexual satisfaction. Gelenberg et al. reached the same conclusion in a study of venlafaxine and fluoxetine [143]. In other words, for patients who did not get better from taking the antidepressant, it appears the side effect burden compounded the ISS they were already experiencing due to their depression [146].

In terms of impact on QoL, the IsHak et al. study found that Q-LES-Q scores (excluding the sexual satisfaction item) were lower in those with ISS than in those without, both before and after treatment. As with mood symptoms and sexual satisfaction, QoL improved following treatment in the overall sample as well as in the subset of subjects both with and without ISS. A multivariate regression analysis showed a substantial effect of ISS on overall QoL, with regression coefficients of –5.0 pretreatment and –8.1 post-treatment, after adjusting for age, gender, ethnicity, marital status, and depression severity; similar results were found using continuous score on the sexual satisfaction item rather than categorically defined ISS. Patients with poor symptomatic response to citalopram had lower QoL than would be expected from depression severity alone, suggesting the role of ISS in further QoL reduction. This was not true of those with a favorable treatment response. The principal recommendations made by the authors were that clinicians treat depression thoroughly until remission and recognize the importance of sexual satisfaction for QoL, and that investigators conduct randomized controlled trials in this area [146].

Research on sexual health in individuals living with bipolar disorders has been relatively scant, with much of the literature focusing on the contribution of childhood sexual abuse (and other types of abuse) to the development and course of bipolar disorders [147–154]. In that regard, a 2013 systematic review concluded that prevalence of sexual abuse was higher in persons with bipolar disorder than among healthy individuals, but not higher than people with other forms of psychiatric illness [151]. A separate systematic review by the same author found that a history of sexual abuse was weakly associated with a number of signs of illness severity—suicide attempts, substance use disorders, psychotic symptoms, and early age of illness onset—though the author raised the possibility that these were indirect effects [152].

Much of the remaining literature on sexuality in bipolar disorder has focused on sexual risk behaviors, which can occur during manic and hypomanic phases of the condition [155–158] or even in euthymic states between mood episodes [159]. These behaviors can include more frequent casual or non-monogamous sexual activity [159, 160], having sex with partners whose HIV status is unknown [159], and having sex without using a condom [160] (though one study found this was no more common in women with bipolar disorder than controls [159]). As McCandless and Sladen have pointed out, such behaviors have the potential to create painful consequences that range from strained or severed relationships when sexual indiscretion is involved, to contraction of sexually transmitted infections, increased risk of sexual exploitation (especially among women), and unplanned pregnancy [157], all of which have been associated with reduced QoL, either directly [161–163] or indirectly (e.g., via increased risk of depression in the case of unplanned pregnancies [164]). In a particularly striking finding, Dell’Osso et al. found that bipolar participants, as compared to unipolar depressed participants and healthy controls, were more sexually active and promiscuous, and that among the bipolar group a history of periods in which sexual partners changed frequently was linked to increased thoughts of death. The same study found that impairments in all phases of the sexual response cycle had a higher lifetime prevalence among people with bipolar disorder (as well as unipolar depression) than those without [165]. McCandless and Sladen have argued for sexual health promotion measures in this population while decrying a death of evidence to guide such efforts [157].

An interesting study by Lam et al. assessed the marital and sexual satisfaction of 37 heterosexual spouses of people living with bipolar disorder using semi-structured interviews and standardized instruments. On average, partners’ sexual satisfaction and marital satisfaction suffered when patients were either manic or depressed relative to when they were well, and this was true for both men and women. Not surprisingly, marital dissatisfaction was associated with sexual dissatisfaction. The difference in partners’ sexual satisfaction levels when patients were manic vs. depressed was not statistically significant, but overall marital satisfaction was lower when patients were manic rather than depressed. A number of specific problems were reported to be more frequent when patients were experiencing a mood episode. For male partners these included avoidance of sexual contact , dissatisfaction with the sexual side of their relationships, and difficulty communicating sexual needs. For female partners, vaginismus was more prevalent when patients were either manic or depressed, and sexual dissatisfaction was also greater during their partners’ episodes. Female partners complained of sexual infrequency during patients’ depressed phases more so than during their manic phases. The authors discussed possible mechanisms for the reductions in sexual satisfaction among partners, such as difficulty adjusting to a patient’s changes in sexual interest, responsiveness, sensitivity, or affection. They concluded by recommending interventions involving education, problem-solving strategies, and sex therapy to help to reduce marital dissatisfaction [166].

There is limited data regarding the effects of treatments for bipolar disorder on sexual functioning. Lithium has long been a mainstay of treatment of bipolar disorder, although this has changed in recent years with the rise in use of certain anticonvulsant mood stabilizers and, increasingly, atypical (also known as second-generation) antipsychotics [167, 168]. A 2014 study by Grover et al. found that among 100 clinically stable patients receiving lithium for at least 2 years, one third reported sexual dysfunction as measured by ASEX, including problems with desire, sexual drive, arousal, and erectile dysfunction/vaginal lubrication. In most cases, more than one domain was affected. Prevalence of sexual dysfunction did not differ by gender, nor was it affected by sociodemographic variables, clinical variables including residual mood symptoms, or lithium dose. Those who experienced sexual dysfunction as a group had a greater number of additional side effects of lithium, lower Global Assessment of Functioning (GAF) scores, and worse medication adherence [169]. Ghadirian et al. studied sexual functioning in a sample of 104 outpatients with bipolar disorder taking lithium alone or in combination with other medications. Nearly half (49%) of patients taking a combination of lithium and benzodiazepines reported deficits in sexual functioning, as compared to 14% of those taking lithium alone and 17% of those taking lithium in combination with other drugs. In contrast to Grover et al., this led the authors to attribute problems with sexual function to concomitant use of benzodiazepines rather than lithium, which they concluded had no “major effect” on sexual function [170]. Lastly, a study of antipsychotic treatment in 108 men with remitted bipolar I disorder found that 66% of participants reported dysfunction in either sexual desire, arousal, attainment of orgasm, or a combination thereof. ED was the most commonly reported type of dysfunction with a rate of 42%, and was more prevalent in users of typical (first-generation) than atypical (second-generation) antipsychotics [171]. Although none of the above studies of bipolar treatments included an unmedicated control group so as to compare prevalence rates, it is clear based on absolute rates alone that clinicians should be attentive to medication-induced sexual dysfunction in this population, given important ramifications for illness management, adherence, and QoL.

Sexual functioning in anxiety disorders is understudied and to date has not included explicit assessment of QoL. Kendurkar and Kaur administered the ASEX to groups of men and women with MDD, Generalized Anxiety Disorder (GAD) , and Obsessive-Compulsive Disorder (OCD) as well as healthy individuals, in order to compare rates of sexual dysfunction. Study participants had not taken psychiatric medications during at least the preceding month. Sexual dysfunction was more prevalent in participants with GAD (64%) and OCD (50%) than in healthy participants, but less than in those with MDD (76%). Whereas participants with MDD were nearly three times as likely to have sexual dysfunction as controls, the odds ratios for GAD and OCD were 2.0 and 1.5, respectively, and were similar among women and men. The most frequent complaints among men with GAD were low desire (31%) and ED (28%), and among women with GAD were orgasmic dysfunction (44%) followed by poor orgasmic satisfaction and low desire (both 39%). The most common sexual complaint among both male and female participants with OCD was orgasmic dysfunction (46% and 45%, respectively). In men, participants with OCD had the highest rates of orgasmic dysfunction among the four groups, whereas in women rates were similar among the three clinical groups. All three diagnostic groups reported similar mean levels of severity (as opposed to prevalence) for penile erection/vaginal lubrication, orgasmic function, and orgasmic satisfaction, and mean scores on all ASEX items were similar between GAD and OCD [172]. The study results were generally consistent with the few other published studies on this topic [173–177]. Of note, severity of sexual dysfunction in this study did not depend on psychiatric symptom burden as measured by standard scales for depression, anxiety, and OCD [172]. This speaks to the importance of gauging domains beyond psychiatric symptoms in considering the overall impact of illness on a person’s life, with sexual functioning being one important dimension.

Medication treatments for GAD and other forms of anxiety as well as OCD overlap greatly with those for depression, namely the use of serotonergic medications described previously. Therefore, the same sexual side effect considerations discussed in the Depression section above apply in those cases. At least two studies have focused on sexual issues related to medications for GAD not previously mentioned in the context of depression. Notwithstanding potential conflicts of interest disclosed by the authors, Clayton et al. found that GAD patients prescribed vilazodone, a newer SSRI, had a similar sexual functioning profile to those receiving placebo [178]. Othmer and Othmer found that sexual function normalized over a four-week period in a small sample of GAD patients receiving buspirone who reported sexual dysfunction prior to treatment [176]. Effects of treatment on QoL were not explicitly assessed.

Individuals with schizophrenia and schizoaffective disorder suffer disproportionately from a range of sexual problems relative to the general population. At the same time, contrary to common perceptions, studies have found that a large proportion of people with schizophrenia and schizoaffective disorder are sexually active, supporting the importance of determining the impact of sexual dysfunction on QoL in individuals with these disorders. While there are some conflicting findings, the preponderance of evidence supports an association between sexual dysfunction and reduced QoL in this population.

It is first important to recognize that people living with schizophrenia and schizoaffective disorder as a group are interested in sex and to a great extent are sexually active. In a small study of 23 chronically institutionalized women with schizophrenia, 18 of 23 responded that they would like to have an active sex life , 16 indicated they would not hesitate to have sex with a man they found attractive, and 15 reported having had intercourse within the preceding 3 months despite being hospitalized [179]. Aizenberg et al. found that among 122 men with schizophrenia, the majority reported being sexually active despite a high frequency of sexual dysfunction [180]. Additionally, in a study by Lyketsos et al. comparing 113 individuals with schizophrenia to 104 healthy controls, the groups did not differ in the proportion of participants with sexual dreams and fantasies, and those with the diagnosis reported having intercourse more than once per week [181].

Numerous studies have shown that sexual dysfunction is extremely prevalent in both treated and untreated individuals with psychotic disorders. Although a detailed discussion of mechanisms is beyond the scope of this chapter, it is generally agreed that both the illness itself and side effects of antipsychotic medications used to control psychotic symptoms are responsible for these problems, albeit possibly with differential effects [180, 182–188]. Unsurprisingly, medications that tend to increase prolactin levels, in particular, have been implicated in sexual dysfunction in men, whereas prolactin-sparing medications have been shown to cause fewer such problems [189].

Macdonald et al. compared responses to self-reported gender-specific surveys regarding sexual dysfunction from 135 persons with schizophrenia and 114 controls. One or more types of sexual dysfunction were reported by 82% of men and 96% of women in the schizophrenia group. Specifically, men with the diagnosis had reduced sexual desire, increased ED and PE, and less satisfaction with orgasm intensity. Relative to controls, female patients reported reduced sexual enjoyment [187]. Other studies have found very high rates of sexual dysfunction in this population, ranging from 50–88% in men and 30–94% in women depending on the study, according to literature review conducted by Bushong et al. [190].

Aizenberg et al. [180] compared 51 patients on long-acting injectable antipsychotics, 20 nonmedicated patients, and 51 healthy controls with regard to sexual dysfunction using a detailed structured interview. Sexual dysfunction was highly prevalent in both treated and untreated patients, with levels of sexual desire being reduced in both groups. However, problems with arousal (erection) and orgasm during sex were reported mainly by the medicated group, as was overall dissatisfaction with sexual functioning, while reduction in the frequency of sexual thoughts was found only in those not receiving medication. Subjects with schizophrenia were more involved in masturbatory activity than control subjects, consistent with at least one other study which found that the primary sexual activity of persons with schizophrenia is auto-erotic in nature [188].

Given the importance of sexuality to people living with schizophrenia, the very high prevalence of sexual problems in this population begs an understanding of how such problems impact patients’ QoL. However, as several authors have pointed out, the subject of sexuality is often neglected by clinicians treating individuals with psychosis. This may have many causes: clinicians failing to realize that many people with schizophrenia are sexually active [191]; clinicians underestimating the prevalence of sexual problems in this population [189]; discomfort among both providers and patients around the topic of sexuality [182, 186]; a belief that discussion of sexual matters will trigger or worsen symptoms [192]; or simply an assumption that myriad other concerns (such as amelioration of psychotic symptoms) take precedence. In reality, in one telling example, Finn et al. found that patients rated impotence as more bothersome than any positive psychotic symptom [193]. It is not surprising, then, that sexual side effects of antipsychotic medications are one important (and underappreciated) cause of nonadherence to treatment [194, 195].

Irrespective of degree of attention from clinicians, a number of investigators have posed the question of whether sexual dysfunction is associated with reduced QoL in people living with psychotic disorders, and the weight of evidence supports such an association. Olfson and colleagues examined cross-sectional associations between sexual dysfunction, psychiatric symptoms, global function, and QoL among 139 male outpatients meeting criteria for schizophrenia or schizoaffective disorder. The authors were especially interested in the effect of sexual dysfunction on the ability to form and sustain intimate relationships in this population. Sexual function was assessed using the Changes in Sexual Functioning Questionnaire (CSFQ), which covers sexual desire/frequency, desire/interest, pleasure, arousal, and orgasm. Items from the Quality of Life Interview were used to assess QoL. Nearly half (45.3%) of the subjects exceeded the CSFQ threshold indicating sexual dysfunction. Of note, while neither symptom burden, global functioning, nor proportion with substance use disorders differed significantly between those with and without sexual dysfunction, the groups did separate with respect to QoL. After controlling for age and race/ethnicity, those with current sexual dysfunction reported lower general QoL as well as less satisfaction with the amount of enjoyment in their lives. Furthermore, subjects with sexual dysfunction were only about one-third as likely to have a romantic partner. Those who did have partners reported lower satisfaction with the quality of those relationships, by an average of slightly more than one full point on a seven-point scale. Relationship satisfaction suffered, relative to those without sexual dysfunction, not only in terms of sexual satisfaction but extending to include a reduced likelihood of talking to their partners about their illness, sharing personal thoughts, being praised by their partners, and being reminded by their partners to take medications (with this last finding approaching but not reaching significance). The authors concluded that sexual dysfunction is an important contributor to reduced QoL in this population, and one that merits improved recognition and attention as well as further research. While acknowledging that relatively little is currently known about how to ameliorate sexual dysfunction in this population, they recommend that clinicians have open discussions about sexuality with patients, provide sex education and rehabilitative interventions to build intimacy skills where appropriate, and consider pharmacologic approaches (dose reduction, medication switching, or specific drug therapies) when antipsychotics are implicated in the dysfunction [196].

In contrast to the preceding study conducted in men, a study by Fan and colleagues of men and women with schizophrenia and schizoaffective disorder did not find a significant association between any subscale measures of the CSFQ (see preceding paragraph) and two instruments intended to measure QoL, Heinrichs’s Quality of Life Scale (QLS) and the Behavior and Symptom Identification Scale (BASIS) [186]. It should be noted, however, that Heinrichs’s QLS, an observer-rated instrument developed by Heinrich et al. in 1984, was designed to measure “deficit symptoms” (i.e., negative symptoms) of schizophrenia, and therefore includes such items as social initiative, withdrawal, role function items, motivation, anhedonia, and emotional interaction. For this reason, despite its name this scale likely does not adequately assess QoL as now commonly defined and as conceived in this chapter (at the very least, an observer-rated scale cannot measure a participant’s subjective QoL). Similarly, the BASIS, a self-report scale , asks respondents to rate “how much difficulty [they] have been having” in a variety of functional (e.g., work, school, social, household, leisure) and symptomatic (e.g., depression, anxiety, suicidality, concentration/memory) domains and therefore serves more properly as a measure of global functioning rather than QoL per se. Even so, the association between sexual desire/frequency dysfunction and higher BASIS score (indicating greater global functioning deficit) approached significance. With these clarifications in mind and despite the authors’ interpretations, the above findings are in fact consistent with, rather than contradictory to, the Olfson et al. study in that both studies showed that neither symptoms (negative symptoms in the case of the present study) nor global functioning were significantly associated with sexual dysfunction; conclusions about QoL arguably cannot be drawn from the Fan study in the absence of a suitable measure of QoL [197].

A more recent study conducted in China also failed to find a significant association between sexual dysfunction (as measured by the ASEX) and QoL (as measured by the SF-12) among 607 primary care patients with schizophrenia, a finding the authors considered surprising. The authors conjectured that the brevity and generality of the SF-12, as opposed to a measure which includes items specific to QoL related to sexual function, makes it probable that the instrument was not sufficiently sensitive to detect QoL changes [198].

Another relatively large study by Bushong et al. [190] surveyed 238 adult outpatients who met criteria for either schizophrenia or schizoaffective disorder and were being treated with risperidone, quetiapine, or olanzapine. Among the measures collected were the ASEX for sexual dysfunction and a single item querying general life satisfaction from the Quality of Life Interview developed by Lehman et al. The authors found a negative relationship between ASEX total score and general life satisfaction for the overall sample, after adjusting for potential covariates. (There was no significant association, however, when running the analysis for men and women as separate groups.) As noted by the authors, while a small effect size was observed, the correlation was of comparable strength to that between subjective QoL and both positive (r = –0.15) and negative (r = –0.12) symptoms of psychosis reported in a 2007 meta-analysis by Eack and Newhill [199]. Additionally, associations were seen between general life satisfaction and each of the five items of the ASEX individually. The strongest among these was with the “physical arousal” item querying vaginal lubrication or penile erection. Among several limitations mentioned by the authors, the lack of a non-medicated or pretreatment group precluded the ability to determine whether the sexual dysfunction and related QoL deficit were characteristic of the illness itself, medication side effects, or both. Regardless, the authors recommended that clinicians screen their patients on antipsychotic medications for sexual side effects and, if present, considering switching medications. Underscoring this recommendation is the finding by Adrianzen et al. that sexual dysfunction was the treatment-emergent adverse event most strongly associated with reduced health-related QoL for patients on neuroleptics, stronger than both extrapyramidal symptoms and tardive dyskinesia, two conditions which clinicians screen for regularly [200].

In summary, evidence suggests that people living with schizophrenia and schizoaffective disorders are interested in sex and are sexually active but suffer from a very high burden of sexual dysfunction, owing both to the disorders themselves and to medications used to treat them, and this is associated with reduced overall QoL as well as reduced treatment adherence. There is little if any evidence basis, however, for recommending interventions that specifically improve sexuality-related QoL in this population. Nonetheless, expert opinion has centered on the following recommendations: (1) Increased awareness among clinicians about sexual problems in this population [182, 186, 188, 189, 196]; (2) Provision of sex education whenever possible, including the incorporation of sex education into rehabilitative programs [182, 196]; (3) Inquiry and open discussions with patients about sexual matters with the aim of tailoring treatment accordingly [182, 186, 196]; (4) Consideration of dose reduction or change in medications where applicable, particularly to an agent not associated with significant prolactin elevation [189, 196]; (5) Use of other pharmacologic approaches (e.g., PDE-5 inhibitors for erectile dysfunction) [187, 196]; (6) Further research into sexual dysfunction and QoL in this population [196].

Dementia (the term used in DSM-IV and earlier editions, and therefore in most existing studies), also known as Major Neurocognitive Disorder (the DSM-5 term) is, generally speaking, a disorder of old age, with a prevalence of about 14% of people in the United States over the age of 71 [201]. As such those living with this condition are subject to some misconceptions regarding old age in general, namely that sexuality is reserved for the young [202]. In fact, sexuality is a part of human nature throughout the life cycle [203]. Furthermore, although sexual frequency often decreases with advancing age [202], older people remain sexually active, at a rate of 50–80% of adults over the age of 60 [204]. Similarly, despite common assumptions to the contrary, couples affected by dementia continue to be interested in sex and maintain physical intimacy in their relationships [203]. In a study of male nursing home residents with dementia, intimacy was strongly associated with life satisfaction and contributed to QoL [205]. However, the cognitive, physical, and environmental impairments experienced by people with dementia can interfere with the ability to express and experience sexuality [206]. In some individuals living with dementia, sex may represent a form of compensation for the cognitive and functional losses, which erode self-esteem. Those living in nursing facilities may experience an increased psychological need for intimacy due to the lack of physical closeness in those environments [207], which for a variety of reasons including privacy and staff attitudes are usually not conducive to sexual expression [208, 209]. This in turn can contribute to the well-known hypersexual or sexually inappropriate behaviors of some patients with dementia which, although rare, can impact the QoL of everyone involved [207], and have been the focus of a great deal of research [207, 210–214]. Benbow and Beeston presented a model, modified from an earlier version by Roach [215], of “proactive protection” in managing difficult sexual behaviors of nursing home residents, characterized by supporting and educating staff while showing regard for residents’ needs, dignity, and autonomy. Notably, improved QoL for residents serves as a central hub in the model, with a number of the other components flowing into it (e.g., positive resident–staff interactions) or out from it (e.g., greater job satisfaction for staff) [202].