Healthcare Utilization in Women Diagnosed with Hypoactive Sexual Desire Disorder: Interim Baseline Results from the HSDD Registry for Women

Introduction

Sexual dysfunction is increasingly recognized as an important component of overall health status. ^1,2 In particular, hypoactive sexual desire disorder (HSDD) is defined as an absence or deficiency of desire for sexual activity, which causes marked distress or interpersonal difficulty and cannot be better attributed to another medical/psychological condition or substance. ³ Distressingly low sexual desire is estimated to affect 7%–12% of women and has been associated with a significant decrement in health-related quality of life (HRQOL). ^{2,4 –6} Current treatment approaches range from off-label androgen therapy to various forms of psychological and sex therapy; ^{7 –13} however, the dearth of evidence concerning efficacy or safety of currently available treatment options, along with concerns about potential adverse effects of treatment and the underresearched natural history of HSDD, creates substantial barriers to effective clinical management of the condition. Despite the potential importance of HSDD in broader physical and mental health status, clinicians seldom assess sexual problems during routine examinations, ^{14 –17} which decreases the likelihood that adequate care is offered to women with HSDD.

A recent large survey of women in the United States showed that 35% of women with distressing sexual problems (including decreased desire) reported seeking formal healthcare for the problem. ¹⁷ Women who sought help from a healthcare provider for specific problems of distressing decreased sexual desire were more likely to be connected to the healthcare system, have a current partner, and report greater levels of sexual-related distress. Of note, two thirds of the women who sought formal help received no treatment for their sexual problems. However, the study was limited in its ability to examine treatment use, as sexual desire problems were self-reported in a mailed survey. The diagnosis was not confirmed by a clinician, nor was it determined if women with this complaint were appropriate candidates for HSDD treatment.

An understanding of the treatment-seeking behavior and treatment use of women with clinically diagnosed HSDD is important to identify potential barriers and avenues for addressing sexual health needs in the medical care system. To date, there have been no studies identifying pathways that women with clinically diagnosed HSDD have used to seek formal or informal help or treatment use upon diagnosis. Our objective was to investigate the help-seeking behavior and current treatment use of women recently diagnosed with HSDD in the clinical setting.

Materials and Methods

Results

Baseline characteristics of the women with HSDD by treatment-seeking status are presented in Table 1. The average age of premenopausal women in this Registry sample was 36.2 years (standard deviation [SD] 8.8, range 18.0–55.0), and that of postmenopausal women was 55.7 years (SD 7.2, range 36.0–80.0). Women who were formal treatment seekers were more often older, postmenopausal, white, heterosexual, and married or living with a partner compared with women who sought only informal or no prior help. Notable differences were also apparent about access to the healthcare system; for example, formal treatment seekers were more likely to have private health insurance, prescription drug coverage, polypharmacy (taking ≥5 current prescription medications), and more medical or psychiatric comorbidities. Although formal treatment seekers were more likely to report a longer duration of HSDD symptoms, there were no differences in general sexual function score (as measured by the validated Female Sexual Function Index [FSFI]) ²³ or the frequency of distress over desire problems (as measured by the validated Female Sexual Distress Scale ²⁴ question item).

Of the 338 women who sought formal healthcare for their sexual desire problems, 218 (64%) had received some form of treatment, whereas 120 women (36%), mostly premenopausal, had not received treatment for HSDD (Table 2). Women who received treatment for HSDD used a variety of help-seeking avenues (Table 2). Overall, 20% of the treated women received an off-label prescription medication for HSDD, 18% had professional counseling, and 49% reported using some type of nonprescription medication, OTC product, or alternative treatment. Of hormonal therapies, testosterone and estrogen were used in similar proportions among premenopausal women, whereas in postmenopausal women, estrogen use was slightly higher. Nonhormonal prescription medications were uncommon (n = 11, 3%) and were mostly for bupropion (n = 5). The most widely used treatments were lubricants or arousal creams (36%), particularly among postmenopausal women (47%). To explore the possibility that use of lubricant/arousal creams was related more to lubrication difficulties than desire problems, we conducted additional analyses comparing relevant FSFI scores for women who did (n = 122) and did not (n = 215) report use of lubricant/arousal creams for HSDD treatment. Results showed that women who used lubrication/arousal creams had significantly lower scores on the FSFI lubrication domain (median 2.4 [inter-quartile range 1.5, 3.9] vs. 3.3 [1.8, 4.2], Kruskal-Wallis test, p = 0.02), but desire domain and arousal domain scores did not differ by lubricant/arousal cream use (both groups: desire domain median score 1.8, arousal domain median score 2.1, Kruskal-Wallis tests, p = 0.9).

Informal prior help-seeking behavior involving community or anonymous sources was reported by 34% of formal treatment seekers. Most commonly, they reported having sought help through discussions with their partner or through Internet web searches. Over half of women, regardless of menopausal status, reported that the first healthcare provider they consulted about sexual desire problems was an obstetrician gynecologist.

Perceived barriers to help seeking are described in Table 3. The most common reason for delaying or not seeking help for the sexual desire problem was “thought it would pass or be temporary” (61%) and was most commonly endorsed by premenopausal women. Almost half of all women endorsed reasons that their problem was a “normal part of aging or a long-term relationship” (47%), a “personal/private matter” (44%), or that they were “embarrassed to discuss it” (42%). Over a third of all women were “unsure where to seek help.” Although just 13% reported that lack of adequate health insurance was a barrier, this reason was more frequently cited by women who did not seek formal help (16% vs. 10%, p = 0.01). None/informal help seekers were also more likely to believe that their sexual desire problem was a personal/private matter (49% vs. 38%, p = 0.001) or would resolve on its own (65% vs. 57%, p = 0.03).

Motivation to seek help was triggered by wanting “to feel like a normal person again in terms of sexual desire” for 70% of all participants of the study (Table 3). Similarly, 67% noted that their own increasing bother was a stimulus to help seeking, whereas 58% noted that their partner's bother was a factor. Differences between women who did and did not seek formal help were statistically significant for most of the motivating factors. In particular, women who sought formal help were more likely to endorse the belief that their “overall relationship with my partner was suffering due to my decreased sexual desire” (59% vs. 43%, p < 0.0001) and that their “sense of femininity or sexual self” was diminishing (51% vs. 39%, p = 0.001).

The multivariate predictive model building process resulted in the following statistically significant predictors of formal healthcare seeking: postmenopausal status (p <0.0001), being married or living with a partner (p = 0.004), having sexual desire problems for > 5 years (p = 0.01), having private health insurance (p < 0.0001), having ≥ 5 current prescription medications (p = 0.01), and having current symptoms of depression (p = 0.01). In multivariate model 2, which also considered the factors that women themselves perceived to influence their treatment-seeking behavior, four additional factors were predictive of formal treatment seeking: a belief that the problem was personal/private (p = 0.006) and a belief that it would be temporary (p =0.045) were inversely associated with formal treatment seeking, whereas a belief that the partner relationship was suffering (p < 0.0001) or if there was a decreased sense of femininity or sexual self (p = 0.003) was positively associated with formal treatment seeking. Factors that were statistically significant in unadjusted (bivariate) analyses but did not retain significance on mutual consideration of other factors were age, race, education, and number of comorbidities.

Discussion

In this analysis of women enrolled in the HSDD Registry for Women, more than half of the participants had not sought formal help from a healthcare practitioner for their disorder. Among those who did seek formal help, almost two thirds received some form of treatment, whereas 36% remained untreated for HSDD. Regardless of menopausal status, lubricants or arousal creams were the most common remedies used by women who had discussed their desire problems with a healthcare provider. Most prescription medications used to treat HSDD were off-label hormonal products, with similar representation for testosterone and estrogen-based medications. Women were more likely to have sought formal help if they were married/cohabiting, postmenopausal, had private health insurance, used ≥5 prescription medications, had depression symptoms, or had a longer duration of sexual desire problems. In addition, women who reported their partner relationship or sense of femininity/sexual self was threatened by HSDD were more likely to seek formal healthcare. Women who noted delays in treatment seeking because of beliefs that the problem was private/personal or would not be permanent were less likely to have sought formal healthcare. Regardless of treatment-seeking behavior, most of these women with HSDD had a strong desire to feel like a sexually normal person again, which was the most commonly cited motivating factor for treatment seeking in these women.

An important consideration in interpreting our results is that all women in the Registry agreed to participate in a longitudinal study of HSDD. The act of providing informed consent and agreeing to participate in a study about sexual desire may be a positive marker for help-seeking tendencies. It may also represent a form of help seeking in and of itself for some participants. Thus, differences across categories of treatment seeking may be attenuated in the Registry, and our observed predictors of formal treatment seeking may actually have greater predictive power in the general population of women with HSDD. We note, however, that during the consent process, all participants were informed that no treatments would be provided as part of this observational study. Additional reasons for participating might have motivated women, including the compensation for their time or a general willingness to be a research participant. This aspect of our study design is both a limitation (reduced generalizability to the broader population of women with HSDD) and a strength because it heightens the clinical relevance of our findings as they pertain specifically to women with HSDD who are potential recipients of HSDD treatment.

Our findings on treatment use by women with clinically diagnosed HSDD are a unique addition to research on female sexual dysfunction and access to health services. The current recommended treatment approach is to investigate underlying psychosocial factors and biological contributors and address those that are amenable to intervention. ¹ Psychological treatments remain the mainstay of HSDD management, and the place of pharmacological management for HSDD remains under investigation. ¹ Interestingly, in our Registry sample, off-label prescription testosterone or estrogen medications were more frequently used for HSDD treatment than was psychological counseling, and the use of other prescription drugs, such as bupropion, was relatively rare. Of note, about one third (36%) of formal treatment seekers had used nonprescription arousal gels or lubricants recommended by their providers. However, lubricant/arousal creams may have been used for concomitant lubrication problems rather than desire problems per se, as our analysis also showed their use was associated with lower FSFI lubrication domain scores in users compared with nonusers.

Our findings on prescription medication usage for HSDD are similar to those found in the Prevalence of Female Sexual Problems Associated with Distress and Determinants of Treatment Seeking (PRESIDE) study, which included a nationwide sample of women who self-reported symptoms of distressing sexual problems (including, but not limited to, low desire). ¹⁷ In PRESIDE, 19% of the subsample of women who had sought formal healthcare for a distressing sexual problem reported use of a prescription drug, similar to our finding of 20%. However, in PRESIDE, fewer women (16%) had taken OTC medications (not specified) or had counseling (8%), compared to the Registry participants. The higher rate of counseling and use of nonprescription therapies among formal healthcare seekers in the HSDD Registry may be due to differences in the study populations and research designs, as well as artifacts of questionnaire wording. For example, in the Registry self-administered questionnaire, “lubricant or arousal cream” was its own response category, whereas PRESIDE was less specific in its wording of “over-the-counter medications.” It is possible that PRESIDE respondents did not consider lubricants or arousal creams in the category of OTC medications for sexual problems. In addition, other key design differences may partly explain disparate results. In particular, women in the HSDD Registry were recruited primarily at healthcare clinics, including sexual medicine clinics, whereas PRESIDE used a population-based survey approach. Also, rather than relying on survey-based reports of decreased sexual desire problems, as was done in PRESIDE, the diagnosis of HSDD in the Registry was based on a formal clinical evaluation, which ensured that all participants would be candidates for HSDD treatment.

Our results identified key demographic, personal, and relationship factors that were associated with formal treatment seeking. Marital status and menopausal status were strong predictors of treatment seeking, with married/cohabiting or postmenopausal women more than twice as likely to seek formal healthcare. These findings might be related to a combination of age, duration of the partner relationship, and duration of the desire problem. Depression symptoms were also predictive of formal healthcare seeking for HSDD in the multivariate model, which might be explained by increased contact with the medical care system among women with diagnosed depression. We found that health insurance status was a highly robust predictor of help seeking in our sample of clinically diagnosed HSDD. There was a significant linear trend toward decreasing likelihood of formal healthcare seeking comparing women with private, public, and no health insurance. Women with no health insurance were 83% less likely to have sought formal healthcare, and women with public insurance were 44% less likely than women with private health insurance. Similarly, our finding that polypharmacy is predictive of formal healthcare seeking may be explained by access to and frequent use of the healthcare system. Thus, our results underscore the importance of access to healthcare and use of a healthcare system to facilitate treatment-seeking behavior for HSDD.

Although common themes emerged for factors that motivated women to seek help or caused them to delay seeking help, there were some notable differences between formal and informal treatment seekers. In particular, women whose subjective reports included the belief that the sexual desire problem was personal/private or would be temporary were significantly less likely to have ever sought formal treatment. Prior studies have found that embarrassment about discussing sexual problems with a physician was a significant barrier to help seeking. ^15,17,28 The motivating factors that most differentiated treatment-seeking behaviors were feelings that the partner relationship or a sense of femininity/sexual self was suffering. Also, increasing levels of distress over sexual desire problems were more frequently endorsed by formal treatment seekers.

A limitation of this study is that participants were not selected to be a representative population-based sample of women with HSDD; thus, the ability to generalize our findings about treatment-seeking behavior to all women with HSDD is limited. Another consideration is that we cross-sectionally analyzed participants at the time of study enrollment, which was required to be within 3 months of the initial clinical diagnosis of HSDD, whereas women may have been experiencing symptoms of low desire and associated distress long before the clinical diagnosis was made. Thus, the women in our sample varied in terms of duration of the problem, which could affect treatment-seeking behavior or the choice of treatment. Indeed, our results showed that increased duration of the sexual desire problem was a positive predictor of formal treatment seeking; to account for this, the multivariate model adjusted for this variable. Furthermore, in the subsequent multivariate model, the association between duration of the desire problem and treatment seeking was fully explained by a variable that indicated whether women delayed treatment seeking because of a belief that the sexual desire problem “would pass or be temporary.” This provides evidence that women who have relatively new-onset symptoms of HSDD are often hopeful that the problem will resolve on its own, and for that reason many do not seek formal healthcare. Whether HSDD is likely to remit or spontaneously resolve in some women will be examined in future longitudinal analyses, which will aim to investigate the natural history of the disorder in both treated and untreated women.

In summary, in this study of women with clinically diagnosed HSDD, we found that almost two thirds of women who had sought formal healthcare for their HSDD had received some form of prescription or nonprescription treatment. Treatments varied greatly in scope, but the most common were nonprescription lubricant and arousal creams, which may have been used for concomitant lubrication problems. Off-label hormonal therapies (estrogen, testosterone) were also used by a substantial number of women. Many women noted that a reason they did not seek help for their desire problems was that they did not believe that there were available treatments. Our results indicate the need to increase awareness in the general population that a distressing problem with sexual desire is a valid concern to discuss with a healthcare professional and that therapeutic approaches are available.