National differences in patient–clinician communication regarding hypoactive sexual desire disorder

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National Differences in Patient–Clinician Communication Regarding Hypoactive Sexual Desire Disorder Irwin Goldstein, MD,* Carol Lines, PhD,† Robert Pyke Sr, PhD,‡ and Jan Stefan Scheld, MD† *Sexual Medicine, Alvarado Hospital, San Diego, CA, USA; †Boehringer Ingelheim GmbH, Ingelheim, Germany; ‡ Boehringer Ingelheim Pharmaceuticals, Inc., Ridgefield, CT, USA DOI: 10.1111/j.1743-6109.2008.01204.x

ABSTRACT

Introduction. Despite greater awareness and openness about sexual problems among women, many patients remain reserved about discussing such problems with their doctor. Clinicians are often reluctant to ask about sexual dysfunction. Aim. To learn how clinicians can communicate more effectively with patients who have hypoactive sexual desire disorder (HSDD) by exploring the language used by patients and clinicians in the United States, France, and Germany when describing the symptoms, causes, and correlates of HSDD. Methods. Independently conducted face-to-face, semi-structured interview with 127 clinicians involved in the treatment of female sexual dysfunction (FSD) and 95 women with FSD who were screened for HSDD using a brief adaptation of the Sexual Interest and Desire Inventory-Female®. Main Outcome Measure. Language used by clinicians and patients. Results. Clinicians and patients found FSD a difficult subject to discuss. Recognition of the term HSDD was low, with “decrease in sexual desire” preferred. Distress, currently integral to the diagnosis of HSDD, was an unpopular term. It implied to participants a state of fear or anxiety and a degree of severity not reflected by their feelings about the condition. Key feelings conveyed by patients included low self-esteem, frustration, confusion, dissatisfaction/ discontent, concern, anger, embarrassment, stress, depression, and a sense of being incomplete. Clinicians were frustrated by the lack of effective treatment options for HSDD, which contributed to reluctance in discussing sexual health with patients. Patients were increasingly motivated to seek treatment, with an “improvement in level of desire” identified as the most meaningful treatment outcome, rather than an increase in satisfying sexual events. Conclusions. More carefully constructed definitions, based on understanding the common language between clinicians and patients, would improve doctor–patient communications and set common expectations for treatment of HSDD. Defining HSDD in simpler, non-psychiatric terms such as “decreased sexual desire” illustrates how HSDD can be translated into more patient-friendly language. Goldstein I, Lines C, Pyke R, and Scheld JS. National differences in patient–clinician communication regarding Hypoactive Sexual Desire Disorder. J Sex Med 2009;6:1349–1357. Key Words. Female Sexual Dysfunction; Hypoactive Sexual Desire Disorder; Linguistic Study; Decreased Sexual Desire

Introduction

T

here is growing awareness within the medical profession on the importance of sexual disorders among the general population, and, in women in particular, the existence of the sexual problem of hypoactive sexual desire disorder (HSDD) [1–7]. © 2009 International Society for Sexual Medicine

It has been difficult for clinicians to discuss sexual health problems with their female patients. Explanations for the limited physician-directed clinical discussion include lack of expertise and language strategies to question sexual problems, personal discomfort with the subject of sexual health problems in women, fear of offending female patients, a belief that sexual interest and J Sex Med 2009;6:1349–1357

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Table 1 Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) classification of female sexual disorders DSM-IV-TR classification Female sexual desire disorders Hypoactive sexual desire disorder Sexual aversion disorder Female sexual arousal disorder

Female sexual orgasmic disorder Sexual pain disorder Dyspareunia Vaginismus

Definition Persistently or recurrently deficient or absent sexual fantasies and desire for sexual activity, causing marked distress or interpersonal difficulty Persistent or recurrent extreme aversion to, and avoidance of, all (or almost all) genital sexual contact with a sexual partner, causing marked distress or interpersonal difficulty Persistent or recurrent inability to attain, or to maintain until completion of the sexual activity, an adequate lubrication–swelling response of sexual excitement, causing marked distress or interpersonal difficulty Persistent or recurrent delay in, or absence of, orgasm following a normal sexual excitement phase, causing marked distress or interpersonal difficulty Recurrent or persistent genital pain associated with intercourse, causing marked distress or interpersonal difficulty Recurrent or persistent involuntary spasms of the musculature of the outer third of the vagina that interferes with sexual intercourse, causing marked distress or interpersonal difficulty

Note: The DSM-IV-TR includes three additional categories: sexual dysfunction as a result of a general medical condition; substance-induced sexual dysfunction; and sexual dysfunction not otherwise specified.

activity naturally decline with age, a feeling that there are limited treatment options to offer patients, and that the consultation may take too much time [8,9]. Patients, too, may be reluctant to raise the subject of sexual dysfunction with their doctor [10]. Anecdotal evidence suggests that because female sexual dysfunction (FSD) is often regarded as a taboo subject, patients will not raise the subject directly with their clinician but will skirt around the problem. It is commonly said that patients will seek an appointment with their doctor for treatment of a trivial illness, such as a cold, when the problem they actually want to discuss is sexual dysfunction. Embarrassment is among the most common reasons for failure to raise concerns about sexual problems; this was cited by 68% of respondents in a survey in which 71% of respondents thought that clinicians and other health-care providers would be dismissive of their sexual problems [11]. Despite this, a large-scale survey of more than 3,800 women revealed that over half would like to see a health-care professional about sexual problems [8]. As these studies clearly illustrate, there are important psychological and linguistic barriers to surmount in encouraging clinicians to be more open to discussing FSD with their patients. Much of the existing nomenclature used in the discussion of FSD has strong psychiatric overtones, deriving as it does from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition® (DSM-IV®) and the recent text revision (DSM-IV-TR®) that currently underpins the clinical diagnosis of FSD [12]. The DSM-IV-TR J Sex Med 2009;6:1349–1357

recognizes four distinct disorders of sexual dysfunction in women: female sexual orgasmic disorder (FSOD), female sexual arousal disorder (FSAD), sexual pain disorders, and sexual desire disorders such as HSDD and sexual aversion disorder (Table 1). HSDD is defined in DSM-IV-TR as the persistent or recurrent deficiency (or absence) of sexual fantasies/thoughts, and/or desire for or receptivity to sexual activity, which causes personal distress [12]. The presence of sexually related personal distress, unrelated to a major psychiatric or medical condition or substance abuse, is an important component of the diagnosis of HSDD; unless women feel distress, decreased sexual desire is not in itself considered a problem and therefore of little clinical relevance. Judgement of the degree and severity of distress related to decreased sexual desire is made by clinicians, taking into account factors that are known to affect sexual functioning, such as age and the patient’s personal circumstances. However, given the prevailing psychiatric nomenclature that currently governs FSD, clinicians may find it difficult to use patient-friendly language in discussing HSDD and thus make it more difficult for patients to understand what they are trying to convey or make patients feel uncomfortable about the sexual problem they have had the courage to raise with their doctor. In this manuscript, we describe the outcomes of qualitative studies undertaken in France, Germany, and the United States to explore the language used by patients and clinicians when describing the symptoms, causes, and emotional and physical correlates of HSDD.

Patient–Clinician Communication on HSDD Methods

Study Design and Methodology A thorough semi-structured interview was conducted by the marketing research agency, Quester GmbH, for the sponsor of this study, Boehringer Ingelheim Pharmaceuticals, Inc. Representatives of the agency are experts in the study of language (linguistics), using proprietary interview methods and proprietary software with linguistic concepts and analytic techniques. The researchers are trained to identify the cues in consumer/patient language, even if hidden in interview transcripts, which indicate underlying meaning and motivation. These cues are used to trace the logic links between ideas, in order to develop a full picture of the consumer/patient decision-making process. In this linguistic study, Quester GmbH interviewed clinicians experienced in treating FSD and subjects found on detailed screening to have characteristics of HSDD (hereinafter called HSDD patients) in three countries: France, Germany, and the United States. Subjects were drawn from the database panel of a market research vendor, according to the study recruitment criteria, and were included based on their declared willingness to participate in health-related market research. A similar approach was taken for the recruitment of clinicians. The clinicians interviewed represented a broad spectrum of those treating FSD, and included 45 primary care clinicians, 40 gynecologists, 19 urologists, 25 psychiatrists, and 8 sexologists. Of the 137 clinicians, 62 were in the United States, 40 in Germany, and 35 in France (Table 2). While the patient sample was one of convenience, it was substantial with regard to the HSDD population. Of the 95 women with FSD who were interviewed, 78 had HSDD, 53 of whom were premenopausal and 25 postmenopausal. The other Table 2

Study population Countries

Clinicians Primary care Gynecologists Urologists Psychiatrists Sexologists Patients Premenopausal HSDD Postmenopausal HSDD FSAD

United States

Germany

France

16 15 14 14 3

19 12 4 5 0

10 13 1 6 5

24 14 12

15 5 0

14 6 5

HSDD = hypoactive sexual desire disorder; FSAD = female sexual arousal disorder.

1351 17 women screened for HSDD had FSAD only. Fifty patients were in the United States, 20 in Germany, and 25 in France (Table 2). Screening for HSDD was based on three questions from the Sexual Interest and Desire Inventory—Female© (SIDI-F©), with robust ability to discriminate between HSDD and no sexual dysfunction, and between HSDD and another form of sexual dysfunction, FSOD [13]. Impaired sexual desire or interest was determined from SIDI-F items 4 and 8, which are defined as follows: ITEM 4: DESIRE—FREQUENCY: Over the past month, how frequently have you wanted to engage in some kind of sexual activity, either with or without a partner? How strong was your desire to engage in sex? (Answers of 0, 1, or 2 reveal no or low intensity of interest in sexual activity and never or infrequently interested in it), and, ITEM 8: THOUGHTS—POSITIVE: How often have you thought about sex over the past month? When you thought about sex, what was your level of interest/ strength of desire in having sex? (Answers of 0, 1, or 2 reveal no or low interest and never or infrequently interested in having sexual activity). To qualify for HSDD, the subject must have answered 0, 1, or 2 on these two items each of which has a maximum score of 5, and endorsed “dissatisfied” or “somewhat dissatisfied” rather than “neutral,” “somewhat satisfied,” or “satisfied” on SIDI-F Item 6 (DESIRE—SATISFACTION): Over the past month, how satisfied were you with your overall level of sexual desire/interest? The interviews were conducted live, recorded, and then analyzed for language (linguistics) with proprietary software. The agency interviewer proceeded from predetermined discussion topics to a review of terms about HSDD and to prompts by the interviewer for specific terms. The interviews were not designed to ask specific questions about HSDD, but rather to discuss topics relating to HSDD, based on the premise that it is only through conversation that we can develop a true understanding of how natural language is used. However, the interviewing did involve probing the following so as to gain an accurate picture of clinicians’ and women’s reality: generalizations (words or phrases, the meaning of which is unclear); deletions (pieces of information that were left out, intentionally or unintentionally, for example because clinicians changed the subject); distortions (inaccuracies in, or an indeterminate boundary around, what clinicians said and what they were not saying); and contradictions (two statements made by a clinician that were inconsistent). J Sex Med 2009;6:1349–1357

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Participating clinicians were first asked about their practice, knowledge of FSD, number of patients with FSD, and the extent to which they believed menopausal status influenced FSD. The interview then progressed to a detailed discussion about HSDD, how to diagnose HSDD, and their perceptions of women’s feelings about HSDD and what motivated patients to seek treatment. Finally, clinicians were asked about current treatment options and how successful treatment for HSDD might be effectively measured. In parallel, patients took part in a discussion of their own sexual lives, focusing on changes in their sexual relationship, self-perception of sexual problems and, more specifically, HSDD. In addition to investigating helpseeking behaviors, patients were asked about treatment options they thought were currently available for FSD and, consistent with the clinician interview, asked to describe what they felt would constitute a successful treatment outcome for HSDD (Table 3). Responses from clinicians and patients were recorded during the interview and then analyzed qualitatively using a linguistic, or semiotic, technique that examined the following: what words interviewees used to express their ideas (semantics), how committed or connected the interviewees were to the ideas they expressed (syntactics), and in what context interviewees expressed their thoughts (pragmatics). The result was not only a description of what was said (reac-

Table 3 Topics discussed in the course of face-to-face interviews with clinicians and patients Discussion topics with clinicians Nature of practice and sexual disorders treated

Knowledge of FSD and HSDD How to diagnose HSDD Language used by patients Differentiating language Discussions with patients Perceptions of women’s feelings Treatment options Motivation to treat Definition of successful treatment

Discussion topics with patients About the patient and current situation Satisfaction with sex life Recent “changes” experienced Emotional impact Knowledge of FSD and HSDD Self-perception of HSDD Knowledge of FSD in general Seeking help Motivation to seek help/help sought Discussion with doctor

Treatment options Knowledge of treatment options Creating “ideal” treatment Definition of successful treatment

FSD = female sexual dysfunction; HSDD = hypoactive sexual desire disorder.

J Sex Med 2009;6:1349–1357

tions), but also an understanding of respondents’ meaning, motivation, and decision-making criteria as they related to issues surrounding HSDD. Results

Clinician Attitudes to FSD Face-to-face interviews with U.S. clinicians revealed that they were likely to discuss the subject of FSD more openly with their patients than clinicians in other countries, often starting by focusing on physiologic-, medication-, and diseaserelated causes. Once potential organic etiologies had been eliminated, the clinicians tended to classify these disorders as emotional or psychosexual in origin, which they readily admitted were difficult to treat. In contrast to the United States, FSD was not discussed with ease in either Germany or France. German clinicians tended not to discuss sex at all, particularly with patients born before the 1960s. French clinicians appeared willing to discuss positive aspects of sexuality but shied away from discussing negative aspects. In France, FSD is considered a very intimate issue, which is addressed only indirectly when women visit their gynecologist. Overall, clinicians in these countries were reluctant to bring up the subject of FSD with patients because it might open “Pandora’s Box” about a problem for which they felt there were few, if any, viable treatment options. This included sexologists, sometimes described as the therapists of “last resort” after women have exhausted other medical specialties. Clinician Attitudes to HSDD Clinicians differentiated between the terminology they used to describe the most common types of FSD they saw in pre- and postmenopausal women, but emphasized that there was an overlap between the two groups in relation to disorders of libido and decreased sexual interest (Table 4). There was a widespread perception among clinicians that conditions such as HSDD could lead to significant emotional problems for women (Table 5). Uniformly, clinicians stated that to reach a definitive diagnosis of HSDD, all other potential physiological etiologies had to be excluded. Psychiatrists in particular believed that HSDD rarely, if ever, presented in isolation, but rather would be secondary to other conditions they treated in their female patients such as depression. Likewise, when women were referred to gynecologists, diagnosis of FSD was often secondary to problems such as incontinence.

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Patient–Clinician Communication on HSDD Table 4 Terminology used by clinicians to describe the most common sexual dysfunctions seen in premenopausal and postmenopausal women Most common problems in premenopausal women • Dyspareunia as a result of endometriosis, bladder or uterine prolapse • Decreased or diminished libido, desire; decreased or low sex drive • Decreased interest or lack of interest in sex • Difficulty or inability to become aroused and produce lubrication • Difficulty or inability to achieve orgasm (anorgasmia) • Decreased satisfaction or lack of satisfaction with sex Most common problems in postmenopausal women • Vaginal atrophy or fragility; dryness and lack of lubrication • Pain during intercourse (dyspareunia) • Decreased or diminished libido, decreased or low levels of desire; lack of desire • Decreased interest or total lack of interest in sex

Although clinicians were familiar with the problem of low libido, the current diagnostic term hypoactive sexual desire disorder and its acronym, HSDD, were not familiar to many clinicians in the three countries. In Germany it was notable that clinicians not only had little knowledge of the acronym HSDD but they refused to use it in clinical practice, preferring to translate it into more patient-friendly terms (Table 6).

Clinician Attitudes to Distress in HSDD Although the presence of sexually related distress is currently integral to the diagnosis of HSDD, only French clinicians (in particular, sexologists and psychiatrists) were prepared to embrace the term distress in the context of decreased sexual desire. In contrast, clinicians in the United States and Germany felt the term distress focused too much on anxiety and worry and not on the underlying problem, was not effective in accurately evaluating the emotional impact of HSDD, and was more serious than warranted by the condition. German clinicians also thought the term distress lacked specificity for HSDD. In the United States, clinicians preferred the word concerned to distressed. Table 5 Clinician perceptions of emotional problems associated with hypoactive sexual desire disorder • Low self-esteem, negative self-image, inferiority, inadequate, insecure, different from other women, shame • Frustrated, confused, dissatisfied, disappointed, guilty, regretful • Anxious, worried, concerned, angry, embarrassed, stressed, irritable • Depressed, withdrawn, lonely, lacking energy, lacking interest • Defective, flawed, broken, damaged, deficient, incomplete • Flat, empty, unworthy, undesirable, abnormal

Table 6 Terms preferred by clinicians and patients for hypoactive sexual desire disorder Clinicians

Patients

• Less sexual desire • A decrease in sexual interest • Low libido*

• • • •

Low desire Less sexual desire Less interested in sex Unfulfilled

*Preferred term for clinicians, but considered “too medical” for patients.

Patient Perceptions of HSDD Symptoms Although the term “low libido” is commonly used by clinicians, and was considered by clinicians in all three countries as the most descriptive language for HSDD, this was not the language that patients used to describe how they felt about their condition. Patients also disliked the terms “not in the mood,” “not interested,” and “I couldn’t care less” as descriptions of decreased sexual desire because of the lack of specificity. Such language failed to identify the root of the problem, did not effectively describe a disorder of decreased sexual desire, and was inappropriate when used in the context of a patient motivated to seek treatment for FSD. Patient Feelings toward HSDD Across the three countries, patients with FSD talked about “missing something” in their description of HSDD, a term they neither knew nor liked, preferring to describe the key symptoms of HSDD as “low desire”, “less sexual desire,” being “unfulfilled,” and “less interested in sex” (Table 6). “Less” implied a loss or decrease from baseline, while desire was a term that women were able to relate to and one that conveyed the mental or emotional aspects of their concerns. In France and Germany, the terms “disconnected” and “unsatisfied” were also used. Consistent with the responses from clinicians, patients felt the term “distress” exaggerated the nature of the condition; notably in France, women did not see their problem as a real dysfunction. To patients, the word distress implied anxiety, hiding the problem and fear. In the United States, women felt that the words “stress-inducing,” “concerning,” “bothersome,” and “frustrating” were more apt descriptions of their feelings than distress. In addition, patients disliked the following terms when describing the feelings caused by HSDD: “unattractive,” “not sexy,” and “undesirable.” While some women may have felt unattractive, it was not a feeling associated with a lack of sexual desire. Indeed, a majority of women said they felt wanted by and were sexually attractive to their partners—their problem was J Sex Med 2009;6:1349–1357

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Table 7 Clinician language used to describe a successful treatment outcome for hypoactive sexual desire disorder Country

Language to use

United States

• • • • • • • • • •

Germany France

Improvement in desire More desire More often thinking about sex More often initiating sex Self-fulfilled Well balanced Improvement in desire More desire More often thinking of sex More often initiating sex

a lack of desire and with it an inability to reciprocate their partner’s advances. In France, a lack of desire had no influence on a woman’s perception of her physical appearance. Likewise, the term “unsexy” or “not sexy” had more relevance to physical appearance than to a lack of desire.

Clinician Descriptions of Successful Treatment Across all countries, “improvement in level of desire” was seen as the most appropriate term to describe a positive treatment response, reflecting a response to the core symptom of HSDD (Table 7). In all three countries, clinicians felt this would best reflect the language used by patients and therefore was a term that could be used with ease in discussing HSDD with patients. “Improvement in level of desire” would reflect, as German clinicians indicated, patients having “more interest to engage in sex in terms of both frequency and intensity.” Clinicians in all three countries expressed the view that as primary HSDD was essentially a disorder of psychogenic origin (medical and physical causes having been excluded as part of the diagnostic work-up), this should be reflected in measures of treatment outcome. Thus, physical terms such as “improvement in arousal,” “increase in the number of orgasms,” and “increase in satisfying sexual events” were considered largely inappropriate as determinants of the success of treatment for HSDD. Clinicians in Germany were the most willing to consider using “satisfying sexual events” as an outcome measure providing there was no reference to the frequency of such events. Opinions were divided on the use of “improvement in level of distress,” with French clinicians most supportive. In the United States and Germany, reducing patients’ level of concern was seen instead as a more satisfactory description of outcome. J Sex Med 2009;6:1349–1357

Patient Descriptions of Treatment Needs and Outcomes Across the three countries, patients wanted to improve their level of sexual desire. Patients living in the United States wanted treatment options to increase the frequency of both thinking about and initiating sex. French patients wanted a fulfilled sexual life, improved pleasure and rediscovered sexual health, while German patients wanted “increased intensity” and the opportunity to “feel more secure and more feminine.” These attitudes were reflected in the terms patients used to convey how they believed successful treatment could be described (Table 8). Terms that patients disliked were “empowered,” “desirable,” and “attractive.” Consistent with clinician comments, the term “improvement in level of distress” was not felt to be an appropriate measure of treatment success. Interviews with French patients revealed that women often felt ashamed of their sexual problem and as such were often reluctant to reveal that they “suffered” from their condition. Physical terms such as “improvement in arousal” and “increase in the number of orgasms” were considered largely inappropriate terms for determining the success of treatment for HSDD. An “increase in satisfying sexual events” was considered more appropriate by women in all

Table 8 Patient language used to describe a successful treatment outcome for hypoactive sexual desire disorder Country

Language to use

United States

• Improvement in sexual desire • Increased frequency of thinking about sex • Increased frequency of initiating sex with their partner • Increased frequency of engaging in sex • More intensive feelings/sensations of lust or desire • Having more lust or desire • Increased sensitivity or receptiveness • Increased intensity • Increased need or want • Feeling more secure, more free, more normal • Feeling more feminine • Refreshing the relationship • More honesty in the relationship • Fulfillment of sexual life/experience sexual fulfillment again • Enjoyment every time • To feel or find the sense again • To wake-up your impulses • Improvement of pleasure • To stimulate sexual desire again • To have a more complete relationship • To regenerate the couple • A treatment which helps you reveal or find yourself

Germany

France

Patient–Clinician Communication on HSDD three countries, but to work effectively would need to be associated with desire and wanting to initiate or engage in sex. Again in keeping with physician responses, patients felt the term “improvement in level of desire” with some minor modifications was the most appropriate and relevant term, as it focused on the core symptom of HSDD. In all three countries, this term appeared to be the motivation for women to seek treatment for HSDD. Discussion

The present linguistic study provides further evidence that FSD remains a difficult and sensitive topic to discuss for both clinicians and female patients, to the point that clinicians interviewed in Germany were found to rarely raise the subject with their patients. Likewise, women were often reluctant to mention the subject to clinicians. Although there were differences in the language used by clinicians in the three countries, there were some notable similarities. A lack of sexual desire was identified as the core symptom of HSDD by clinicians in all three countries, but outside the United States, the acronym HSDD was poorly known and, more importantly, disliked. This suggests that the psychiatric nomenclature that currently underpins diagnosis of FSD, at least with respect to disorders of sexual desire, is unpopular with clinicians. Clinicians generally preferred terms such as lack of libido or low desire to describe HSDD. While patients disliked the term low libido because it was too medical, they felt that descriptions of low or decreased sexual desire adequately captured how they felt. Key to any discussion about how women feel about HSDD is the patient’s perception of change in level of sexual desire and an accompanying sense of loss. Although a majority of clinicians found it difficult to develop a unique profile of an HSDD patient, the term “decreased sexual desire” emerged as a satisfactory means of describing HSDD. Studies on the development of new psychometric instruments for FSD such as the Decreased Sexual Desire Screener© suggest that decreased sexual desire can be quantified in such a way as to reliably discriminate between women with and without HSDD [14]. The concept of distress is central to the diagnosis of HSDD according to DSM-IV-TR criteria. Again, among clinicians and FSD patients, there was a dislike of this concept as it currently applies to HSDD as it infers a degree of severity that the condition does not warrant. Clinicians

1355 indicated that the key feelings conveyed by patients with HSDD included low self-esteem, frustration, confusion, dissatisfaction/discontent, concern, anger, embarrassment, stress, depression and a sense of being incomplete. In all countries, clinicians acknowledged that HSDD could have a significant emotional impact on women’s lives leading in some cases to clinical depression and anxiety as well as a profound sense of concern about the health of their relationships. However, they emphasized that terminology was important in differentiating HSDD from true depressive illness as well as other forms of FSD. Across all countries, clinicians stated that in reaching a definitive diagnosis of HSDD, all other potential physiological etiologies had to be excluded. It might be argued that the patients interviewed rejected the term “distress” because they had insufficient symptoms for a true diagnosis of HSDD, i.e., they did not have the DSM-IV-TR requirement of “marked distress” about decreased sexual desire. However, their SIDI-F item scores were well within the range of women diagnosed with HSDD through a much more thorough diagnostic process in a prior validation sample [13]. The current sample of women with HSDD showed much more impairment than women without HSDD in that prior validation sample. Also, it is clear from the agreement of clinicians and subjects in the present sample that discomfort with the term “distress” as applied to decreased desire is a general phenomenon rather than an artifact of the current diagnostic process. Clinicians appeared unwilling to accept HSDD as a primary disorder. Psychiatrists interpreted HSDD as mainly secondary to depression; gynecologists, as secondary to incontinence. To all, if HSDD were not a secondary disorder, then it was interpreted as psychogenic. This implies something deeper than simple discomfort in opening the topic of sexual dysfunction, namely that most clinicians do not yet view HSDD as a legitimate focus unto itself, as a primary clinical disorder, and thus one potentially having distinct biological origins and treatment. Although women commonly view decreased sexual desire as simply part of the aging process and are often too embarrassed to raise the subject with a clinician, they are nonetheless increasingly motivated to seek treatment with the primary motivation being preservation of their relationship. For many women, the opportunity to talk about their problems with a clinician is in itself therapeutic, especially where they are unable to J Sex Med 2009;6:1349–1357

1356 discuss problems openly with their partner. Women with HSDD would, however, also like to resume a normal sexually active life and in this context considered an “improvement in level of desire” as the most meaningful treatment outcome. To patients in the United States, this translated into how often they thought about, initiated, and engaged in sex. This would provide some objective measure for what clinicians in this study saw as a subjectively assessed disorder heavily dependent on the accuracy of patient self-reporting. This study had several limitations. Firstly, as the clinicians and patients recruited represent a convenience sample, this might limit the generalizability of the findings. Secondly, the clinicians who were recruited were primarily medically oriented, as the sexologists included were not necessarily psychologists; again, this may limit the generalizability of the data. Thirdly, the study is likely to be affected by subtle nuances of translation, which limit the direct comparison of specific terms between languages; for example, the fact that only French clinicians were prepared to embrace the term distress within the context of decreased sexual desire may simply reflect a subtlety of meaning in French, rather than a fundamental difference in the attitude of French clinicians, compared with those from Germany and the United States. Finally, the study is inevitably limited by its qualitative nature, and the necessity of allowing sufficient breadth in order to capture a true representation of the participants’ opinions. Influenced by a complicated mixture of psychological, interpersonal, medical including hormonal, and cultural factors, sexual desire disorders in women are undoubtedly complex. In addition to this, communication between clinicians and their patients about sexual desire disorders has been hampered by two other problems. First, the chronic problem of terminology in the field of sexual medicine as a therapeutic area with no diagnostic nomenclature of its own, relying instead on a nosology borrowed largely from psychiatry. It is beyond the scope of this article to deal with the fundamental questions of whether the DSM-IV-TR nosology for sexual dysfunction and the underlying assumptions of “normal” sexual response that currently underpin HSDD diagnoses are appropriately constructed; readers are directed to the recent critique by Mitchell and Graham in the Journal of Sexual Medicine for an in-depth review of these issues. Second is the problem that we still understand far too little J Sex Med 2009;6:1349–1357

Goldstein et al. about the nature and natural history of sexual desire in women; the true prevalence of efficient desire, and perhaps most importantly, the meaning and importance of desire in the sexual lives of women. Despite these communication hurdles, desire disorders such as HSDD need to be proactively addressed by clinicians. As this linguistic study illustrates, more training is needed as to how to facilitate discussions with patients. More carefully constructed definitions based on a common understanding of the language used by both clinicians and patients would better serve the many women who suffer from HSDD and set common expectations for treatment of the disorder. Conclusions

Despite greater awareness of FSD, it remains a sensitive topic for both clinicians and patients. Careful linguistic analysis reveals both differences and similarities in the perception of HSDD among clinicians in different countries, and between clinicians and patients in each country. Consequently, the issue of language is important in HSDD. In the United States, Germany, and France, clinicians will be able to communicate more effectively with their patients with HSDD if they ask patients if they have decreased sexual desire and feel unfulfilled, stressed, concerned, bothered, and/or frustrated about it; they will be able to monitor treatment response more effectively by asking about improvement in the level of sexual desire and increase in the frequency of thinking about sex and initiating sex. Patients in France and Germany preferred describing HSDD using the terms “disconnected” and “unsatisfied” to describe their negative feelings about their lack of sexual desire. As for treatment response, French patients wanted to have a fulfilled sexual life, improve pleasure and rediscover their sexual health, while German patients wanted “increased intensity” and the opportunity to “feel more secure and more feminine.” More carefully constructed definitions based on a common understanding of the language across different nations may help increase awareness of HSDD and help clinicians and patients better understand this common condition. Corresponding Author: Irwin Goldstein, MD, Sexual Medicine, Alvarado Hospital, 6719 Alvarado Rd, Suite 108, San Diego, CA 92120, USA. Tel: 619 265-8865; Fax: 619 265-7696; E-mail: [email protected]

Patient–Clinician Communication on HSDD Conflict of Interest: Dr Goldstein is a consultant for Alagin Research, Aperture, Slate Pharmaceuticals; a member of the Advisory Board of Boehringer Ingelheim, Johnson & Johnson, Medtronic, Plethora Solutions, Vivus; a speaker for Auxilium, Bayer Schering AG, Biosante, Coloplast, Eli Lilly, Pfizer, Solvay, Timm Medical; a grant recipient of Pfizer; and under contract from Boehringer Ingelheim. Statement of Authorship

Category 1 (a) Conception and Design Robert Pyke; Jan Stefan Scheld; Carol Lines (b) Acquisition of Data Carol Lines; Jan Stefan Scheld (c) Analysis and Interpretation of Data Irwin Goldstein; Robert Pyke

Category 2 (a) Drafting the Article Irwin Goldstein; Robert Pyke (b) Revising It for Intellectual Content Irwin Goldstein; Robert Pyke; Jan Stefan Scheld; Carol Lines

Category 3 (a) Final Approval of the Completed Article Irwin Goldstein; Robert Pyke; Jan Stefan Scheld; Carol Lines References

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