Impaired sexual function in women with systemic sclerosis: A cross-sectional study

Authors


Abstract

Objective

To compare sexual functioning and distress in women with systemic sclerosis (SSc) with that in healthy controls and determine the association between disease characteristics and sexual function.

Methods

We conducted a cross-sectional study of 69 women with SSc (ages 18–60 years) and 58 healthy, age-matched controls. Assessment included the Female Sexual Function Index (FSFI), Female Sexual Distress Scale (FSDS), Hospital Anxiety and Depression Scale, Short Form 36 health survey, sociodemographic characteristics, and in patients only, the Health Assessment Questionnaire.

Results

Of 69 eligible patients with SSc, 37 (54%) responded, in addition to 37 (64%) of 58 controls. The FSFI total score and the subscale scores for lubrication, orgasm, arousal, and pain were significantly lower and the FSDS scores were significantly higher in patients with SSc. Longer disease duration and higher levels of marital dissatisfaction were significantly associated with low sexual function in patients with SSc. Longer disease duration, more depressive symptoms, and the use of antidepressants were significantly associated with sexual distress. Multivariate analyses indicated that marital distress was the only variable significantly associated with low sexual function in patients with SSc (β = 0.40, P < 0.05), whereas depression was the only variable significantly associated with sexual distress (β = 0.32, P < 0.05). The same pattern of associations was found in the healthy control group.

Conclusion

Women with SSc reported significantly impaired sexual functioning and more sexual distress then healthy controls. Impaired sexual functioning and sexual distress were associated with marital distress and depressive symptoms. These results indicate that in daily practice, inquiring about sexuality and screening for depressive symptoms is indicated in every patient with SSc, irrespective of their clinical characteristics.

INTRODUCTION

Systemic sclerosis (SSc; scleroderma) is an autoimmune disease characterized by fibrosis of multiple organs. SSc has been found to have a major impact on various aspects of life, including sexuality (1). In men with SSc, the prevalence of erectile dysfunction appears to be substantial (2). So far, the literature on sexual function in women with SSc is scarce.

Bhadauria et al (3) compared sexual function between 60 patients with SSc and 23 women with rheumatoid arthritis (RA) or systemic lupus erythematosus matched for age and disease duration. It was found that women with SSc had a significantly lower number and intensity of orgasms and significantly more women with SSc reported skin tightness and heartburn, reflux, or vomiting as symptoms causing problems during intercourse compared with the control subjects. Sampaio-Barros et al (1) found that dyspareunia was mentioned by 49 (37%) of 131 sexually-active patients with SSc. All of these patients reported vaginal dryness before and worsening of symptoms after the onset of SSc. In a survey by Guerriere et al (4), 40% of 101 patients with SSc reported being sexually inactive, with only 7% attributing their sexual inactivity to SSc. None of these 3 studies had a study design with healthy controls. Moreover, 2 of these studies did not use validated questionnaires to evaluate sexual complaints.

In both healthy subjects as well as patients with a chronic illness, including fibromyalgia, psychosocial factors such as relationship dissatisfaction and depression have been identified as determinants of impaired sexual function (5–8). Recent studies confirm that the prevalence of depressive symptoms is high among patients with SSc, and a relationship between depressive symptoms, disease severity, and specific medical symptoms has been demonstrated (9, 10).

Given the scarcity of data on sexual function among women with SSc, this study was designed to examine the type and extent of sexual problems in women with SSc as compared with healthy women, and to determine associated variables of sexual function in this patient group. The aforementioned observations stress the need to take depression and relationship satisfaction into account.

PARTICIPANTS AND METHODS

Study design.

The study had a cross-sectional, multicenter design. Approval for this study was obtained from the Institutional Review Boards of the 2 participating hospitals and a primary health care center. All participants gave written informed consent. They were compensated with 10 euros ($12.71 US) after returning the questionnaires.

Patients.

Women with SSc were recruited at 2 academic rheumatology outpatient clinics between January 2007 and January 2008. Inclusion criteria were a diagnosis of SSc according to the American College of Rheumatology (formerly the American Rheumatism Association) criteria (11) and age 18–60 years. The selection of patients was done by their treating rheumatologist.

Information leaflets, explaining the aim and the methods of the study, were either sent by mail or handed over in person to all eligible patients. Patients were contacted by the principle investigator (AAS) 2 weeks later, unless the patient had already declined participation. All patients willing to participate were then sent the questionnaires. If the patient was invited by their rheumatologist during a visit at the outpatient clinic, and the patient was interested in participating, the questionnaires were provided immediately.

Healthy controls.

Participating patients with SSc were asked to invite a healthy female friend or a family member of similar age (age range ±5 years) to participate in this study. Because the number of questionnaires returned by healthy relatives or friends was relatively low, a general practitioner (CWVV) invited another 25 consecutive women visiting a primary health care center, who had no SSc or other rheumatic disease and were ages 18–60 years, to participate in the study.

Assessment methods..

Sexual function and sexual distress.

Sexual function was measured by the Female Sexual Function Index (FSFI), a 19-item self-report questionnaire that assesses sexual functioning in women in 6 separate subscales (desire, arousal, lubrication, orgasm, satisfaction, and pain) (4, 12, 13). In addition, a total score (range 2–36) can be computed. Higher subscale or total scores indicate better sexual function. A cutoff score of <26.55 is proposed as a criterion for impaired sexual function (14). The Dutch version of the FSFI has good psychometric properties and differentiates well between women with impaired sexual function and healthy controls (15).

Sexual distress was measured with the Female Sexual Distress Scale (FSDS), which quantifies the personal distress that any sexual complaints cause (14). Consensus-based characterizations of female sexual dysfunction have emphasized personal distress as an essential component of the definition of female sexual dysfunction. The total score ranges from 0–44, with higher scores representing more sexuality-related personal distress. A cutoff score of >15 is proposed as a criterion for impaired sexual function (14). The Dutch version of the FSDS has good psychometric properties and is able to differentiate well between women with low sexual function and control subjects (15).

Quality of life.

Quality of life was measured with the Short Form 36 (SF-36) health survey, which includes 8 domain scores: physical functioning, role limitation due to physical problems, bodily pain, general health perception, vitality, social functioning, role limitation due to emotional problems, and mental health. The scores of the SF-36 subscales range from 0–100, with higher scores indicating better quality of life. The subscales can be converted into 2 summary scales: the physical component summary scale and the mental component summary scale, standardized to a score with a mean ± SD of 50 ± 10 in the general population. For that purpose, we used the scores from an age- and sex-matched normative sample, drawn from a large, random, nationwide sample of adults (n = 1,742) from the general Dutch population (16) and factor score coefficients (17). The psychometric properties of this questionnaire have been found to be adequate (16–18).

Mental status.

Anxiety and depression were measured by means of a Dutch version of the Hospital Anxiety and Depression Scale (HADS), a 14-item questionnaire (19, 20). It was developed to indicate the possible presence of anxiety and depressive states in the setting of a medical outpatient clinic and is considered to be unbiased by coexisting general medical conditions (20, 21). It contains two 7-items scales: one for anxiety and one for depression. Higher scores represent higher levels of anxiety and/or depression symptoms (range 0–21 per scale). The questionnaire is validated for the Dutch language and has good psychometric properties (20).

Disease characteristics and function.

In patients with SSc, disease duration (years) and disease subset (limited or diffuse), were derived from the medical record. In addition, patients were asked to complete the Scleroderma Health Assessment Questionnaire (SHAQ), a 20-item questionnaire comprising 8 domains of activities of daily living with the final score ranging from 0 (no disability) to 3 (severe disability). It additionally contains scleroderma symptom visual analog scales (VAS) for Raynaud's disease, digital ulcers, intestinal symptoms, pulmonary symptoms, overall symptoms, and pain. All VAS were 100-mm horizontal lines, with the anchors on the left being no symptoms and no pain, whereas the anchors on the right were the worst imaginable symptoms and severe pain (22). The SHAQ has been found to be a reliable outcome measure for disease severity in SSc (23).

Sociodemographic variables, menstrual status, marital satisfaction, abuse history, and medication usage.

Sociodemographic variables included age, ethnic origin, status of living (living with a partner yes/no), paid employment (yes/no), and educational level (primary education [0–8 years], secondary education [9–16 years], or higher vocational education/university [≥17 years]). Patients were asked if they were still menstruating, and if not, for what reason (menopause, uterus extirpation, or hormonal therapy).

Sexual function may be influenced by drugs, such as antidepressants. Therefore, the questionnaire asked for information on current medication, which was afterward categorized by the principal investigator (AAS) using the following categories: analgesics, antiinflammatory drugs, antidepressants, anxiolytics, and mood stabilizers.

Marital dissatisfaction was measured by means of the subscale of general relationship dissatisfaction of the Maudsley Marital Questionnaire, a 20-item instrument measuring dissatisfaction with the subject's general relationship, sexual relationship, and life in general (24, 25). Higher scores represent larger dissatisfaction. The questionnaire is validated for the Dutch language and has good psychometric properties (25).

To assess the prevalence of sexual and physical abuse during childhood and later years, the 7-item Sexual and Physical Abuse Questionnaire was used (26). Sexual abuse was restricted to sexual abuse with actual physical contact, and physical abuse was restricted to intentional violence resulting in some kind of physical injury.

Need for counseling.

At the end of the questionnaires, participants were asked if they felt the need to talk to someone about sexual issues, and if so, who they would confide in: their partner, a friend, the general practitioner, the rheumatologist, a social worker, or someone else.

Statistical analysis.

The calculation of the number of patients needed for this study was based on the difference between the FSFI total scores of patients with SSc and those of healthy controls. Assuming a FSFI total score of 30.5 in the healthy population and a difference of 5 points on the FSFI score to be clinically relevant, with α = 0.05 and β = 0.80, the number of patients (N) needed in each group to detect such a difference would be 22 (N = 7.85 × (5.3)2 × 2 / (4.5)2 × 1). All results were reported according to the Strengthening the Reporting of Observational Studies in Epidemiology guidelines for cohort, case–control, and cross-sectional studies (27). Data entry was performed using Microsoft Office Access 2003 (Microsoft, Redmond, WA). Statistical analyses were executed using SPSS software, version 16.0 (SPSS, Chicago, IL).

P values (2-sided) less than 0.05 were considered statistically significant. Descriptive statistics were calculated for all variables. If appropriate, data sets were transformed to get a normal distribution.

Univariate statistics were conducted in order to investigate whether patients with SSc differed on biographic, somatic, and psychological characteristics, sexual functioning, and sexual distress compared with healthy control subjects. In patients with SSc, the univariate association between sexual functioning and sexual distress with somatic and psychological characteristics was assessed with Pearson's, Spearman's, or point-biserial correlation coefficients as appropriate. Variables that were significantly correlated with sexual functioning or sexual distress were subsequently stepwise entered in a hierarchical multiple regression model.

RESULTS

We invited 69 patients to participate in this study (Figure 1). Of these, 24 patients declined participation by returning the answering form or during the telephone contact with the principle investigator, because of embarrassment (n = 5), no sexual relationship (n = 5), not being interested (n = 5), or for other/no reasons (n = 9). Of the 45 patients who were willing to participate, 37 returned the questionnaires, yielding a final response rate of 37 (54%) of 69. Of these, 33 patients volunteered to invite a relative or friend, resulting in 30 questionnaires returned by healthy controls. In addition, 7 of the 25 healthy women recruited at the primary health care center returned the questionnaire, yielding a final response rate of 37 (64%) of 58 healthy women. In 2 patients and 3 controls the SF-36 could not be calculated because of missing values (>10%). The general relation dissatisfaction subscale of the Maudsley Marital Questionnaire was not filled out by 6 of 37 patients and 1 of 37 control subjects because they were not involved in a long-term relationship. All other questionnaires had <5% missing values.

Figure 1.

Flow chart of study participants. GP = general practitioner.

Differences in biographic, somatic, and psychological characteristics between women with SSc and controls.

There were no significant differences in characteristics between patients and healthy controls concerning age, living status, education level, sexual or physical abuse history, or menstrual status (Table 1). A significantly smaller proportion of patients than healthy controls had a paid profession. Moreover, the amount of working hours per week was significantly lower in those patients with SSc having a paid profession than in healthy working women. Significantly more patients with SSc used antiinflammatory drugs and antihypertensives compared with healthy controls. There were no significant differences in any of the variables between patients with limited or diffuse SSc (results not shown).

Table 1. Sociodemographic variables, menstrual status, medication, and disease characteristics of patients with SSc and healthy controls*
 SSc (n = 37)Controls (n = 37)T or χ2 valueP
  • *

    Values are the number (percentage) of patients unless otherwise indicated. SSc = systemic sclerosis; MMQ = Maudsley Marital Questionnaire; NSAIDs = nonsteroidal antiinflammatory drugs; OAC = oral anticonceptives; HRT = hormonal replacement therapy.

  • By t-test for independent sample or chi-square test.

Age, mean ± SD years45.6 ± 9.543.3 ± 8.0−1.1420.257
Living status    
 With a partner32 (86.5)31 (83.8)0.0381.000
 MMQ marital dissatisfaction, mean ± SD score14.4 ± 14.114.2 ± 13.3−0.1320.895
Education level    
 Low (primary, 0–8 years)8 (21.6)10 (27.0)−0.0630.786
 Medium (secondary, 9–16 years)21 (56.8)17 (45.9)0.1080.485
 High (higher vocational/university, ≥17 years)8 (21.6)10 (27)−0.0630.786
Paid employment17 (45.9)33 (89.2)−0.4620.000
Work hours/week, mean ± SD19.9 ± 9.322.6 ± 12.00.7970.429
Sexual abuse7 (18.9)13 (36.1)−0.1930.166
Physical abuse5 (13.5)4 (11.1)0.0371.000
Menopause10 (27.0)6 (16.2)0.1310.397
Medication    
 Analgesics (including NSAIDs)10 (27.0)5 (13.5)2.1050.147
 Antiinflammatory drugs13 (35.1)4 (10.8)6.2370.013
 Antidepressants, anxiolytics, mood stabilizers4 (10.8)4 (10.8)01.000
 Antihypertensives24 (64.9)1 (2.7)32.4150.000
 OAC or HRT3 (8.1)7 (18.9)1.8580.173
Limited SSc18 (51.4)   
Diffuse SSc19 (48.6)   
Disease duration, mean ± SD years6.5 ± 8.8   

The results of the quality of life questionnaires and measures of mental and physical function are shown in Table 2. The mean SF-36 physical component summary subscale score was significantly lower in the patients with SSc than in the healthy controls. More specifically, the SF-36 subscales of role limitation due to physical problems (P < 0.01), general health perceptions (P < 0.01), and vitality (P < 0.01) denoted impairments in quality of life in the patients with SSc as compared with healthy controls (data not shown). Patients with SSc had significantly higher HADS depression subscale scores than healthy controls. Except for significantly higher mean VAS scores for Raynaud's phenomenon in the limited SSc group than in the diffuse SSc group, there were no statistically significant differences between the 2 types of SSc for any of the clinical variables (results not shown).

Table 2. Quality of life, mental functioning, physical and sexual functioning in patients with SSc and healthy controls*
 SSc (n = 37)Controls (n = 37)TP
  • *

    Values are the mean ± SD unless otherwise indicated. SSc = systemic sclerosis; SF-36 = Short Form 36 health survey; HADS = Hospital Anxiety and Depression Scale; HAQ = Health Assessment Questionnaire; DI = disability index; NA = not applicable; VAS = visual analog scale; FSFI = Female Sexual Function Score; FSDS = Female Sexual Distress Score.

  • By Mann-Whitney U test.

Quality of life: SF-36 (range 0–100)    
 Physical component summary scale36.4 ± 11.256.3 ± 9.1−5.9890.001
 Mental component summary scale55.8 ± 8.452.0 ± 6.4−1.6320.103
Mental functioning: HADS (range 0–21)    
 Anxiety4.6 ± 2.95.2 ± 3.4−0.5000.617
 Depression6.3 ± 2.25.0 ± 1.8−2.5290.011
Physical functioning    
 HAQ DI score (range 0–3)0.88 ± 0.55  NA
 HAQ VAS scores (range 0–100)    
  Raynaud's disease51.8 ± 28.7  NA
  Digital ulcers18.6 ± 26.8  NA
  Intestinal symptoms28.7 ± 30.5  NA
  Pulmonary symptoms31.1 ± 25.2  NA
  Overall symptoms46.7 ± 25.6  NA
  Pain41.5 ± 11.4  NA
Sexual functioning    
 FSFI subscale scores (range 0–6)    
  Desire3.1 ± 1.23.4 ± 0.9−1.5580.119
  Arousal3.5 ± 1.94.5 ± 1.2−2.8360.005
  Lubrication3.4 ± 2.15.3 ± 1.1−4.4180.000
  Orgasm3.7 ± 2.24.7 ± 1.4−2.3600.018
  Satisfaction4.0 ± 1.54.6 ± 1.4−1.8690.062
  Pain3.0 ± 2.55.0 ± 1.8−3.7300.000
FSFI total score (range 2–36)20.6 ± 9.427.6 ± 6.2−3.7790.000
FSDS (range 0–44)16.8 ± 12.410.3 ± 10.9−2.4150.016

Differences in sexual function and sexual distress between women with SSc and controls.

The FSFI total score and all subscale scores (except for the subscales desire and satisfaction) were significantly lower in the SSc group than in the healthy controls (Table 2). In addition, FSDS scores were significantly higher in patients with SSc than in the healthy controls. FSFI total scores, subscales, and FSDS scores did not differ between limited and diffuse patients with SSc (data not shown).

With the application of the cutoff score of 26.55, 26 (70%) of 37 patients would be considered to have an impaired sexual function, whereas with the FSDS cutoff score of 15, 21 (57%) of 37 patients would be considered to have increased sexual distress. According to these cutoff values, 18 (47%) of the 37 patients would be considered to have sexual dysfunction (defined as both impaired sexual function plus high levels of sexual distress).

Univariate predictors of sexual functioning.

Among patients, marital dissatisfaction and disease duration were significantly associated with the FSFI total score, with participants with more marital dissatisfaction and longer disease duration showing more impaired sexual function (Table 3). The usage of antidepressants, more depressive symptoms, and longer disease duration were statistically significantly associated with more sexual distress.

Table 3. Pearson's correlation coefficients of the FSFI total score and FSDS score with sociodemographic variables, menstrual status, medication, quality of life, physical and mental functioning, and disease characteristics for patients*
 FSFI (n = 37)FSDS (n = 37)
  • *

    MMQ = Maudsley Marital Questionnaire; NSAIDs = nonsteroidal antiinflammatory drugs; OAC = oral anticonceptives; HRT = hormonal replacement therapy. See Table 2 for additional definitions.

  • P < 0.05.

Age, years−0.14−0.22
Partner−0.070.10
MMQ relationship satisfaction−0.400
Education level (low, medium, or high)0.100.09
Paid employment−0.12−0.12
Sexual abuse0.040.15
Physical abuse0.080.03
Menopause−0.22−0.16
Medication  
 Analgesics (including NSAIDs)0.12−0.03
 Antiinflammatory drugs0.13−0.22
 Antidepressants, anxiolytics, mood stabilizers−0.270.28
 Antihypertensives−0.04−0.11
 OAC or HRT−0.060.14
SF-36  
 Physical component summary scale0−0.23
 Mental component summary scale−0.080.29
HADS  
 Anxiety−0.240.23
 Depression−0.140.33
Disease subset diffuse0.070.12
Disease duration−0.330.35
HAQ score−0.070.20
HAQ VAS scores 0.15
 Raynaud's disease0.020.15
 Digital ulcers0.050.16
 Intestinal symptoms−0.100.16
 Pulmonary symptoms−0.060.17
 Overall symptoms0.110.29
 Pain00.18

In the hierarchical multiple linear regression models, only marital distress (β = −0.40, t = 2.32, P < 0.05) was significantly associated with the FSFI total score and it explained 16% of the variance in the FSFI total score. Disease duration did not account for a significantly additional proportion of variance in the FSFI total score (P > 0.90).

For the dependent variable FSDS score, after controlling for the use of antidepressants (β = 0.31, t = 1.97, P = 0.057), depression (β = 0.32, t = 2.05, P < 0.05) was entered into the equation, explaining an additional proportion of 10% of the variance in sexual distress (F[1,33] = 4.2, P < 0.05). Disease duration did not account for a significant additional proportion of variance in the FSDS score (P > 0.70).

Repetition of these analyses in the healthy women yielded a similar pattern: higher levels of marital distress were significantly associated with more sexual problems and higher levels of depressive symptoms were significantly associated with higher levels of sexual distress (data not shown).

Counseling.

Six patients (16%) with SSc reported a need to talk to someone about current sexual problems, none of the patients mentioned their rheumatologist as a care provider in whom they would confide, and only 1 mentioned her general practitioner.

DISCUSSION

In this cross-sectional study it was found that sexual function was significantly impaired and more sexual distress was reported in women with SSc as compared with healthy controls. None of the specific disease characteristics of SSc were found to be associated with sexual problems or sexual distress in patients with SSc. Marital dissatisfaction was significantly associated with impaired sexual function, whereas depression was the only clinical variable that was associated with sexual distress.

Considering the large variety of SSc-related impairments and limitations that could affect sexual functioning, the lack of studies on this subject is remarkable. There are multiple effects of SSc on the skin and musculoskeletal systems that could have an impact on sexual functioning, including skin thickening resulting in decreased sensibility, decreased hand function, pain, and contractures; Raynaud's phenomena; digital ulcers; and muscle atrophy (28, 29). Vaginal dryness and decreased lubrication may lead to dyspareunia (3). Vaginal ulcers and skin inflammation can result in fibrotic narrowing of the introitus (30). Fatigue and chronic pain may also influence sexual activity, as was demonstrated in patients with RA and chronic noncancer pain due to other musculoskeletal illness (31, 32). Moreover, the physical consequences of the disease may have a negative effect on self-esteem and/or lead to depression and anxiety, which have been found to significantly affect sexual functioning in women (33–35).

In our study, a significant impairment of sexual functioning in women with SSc as compared with healthy women was seen. Our findings are difficult to compare directly with the currently available studies on sexual function in women with SSc due to differences in study design and outcome measures. The FSFI was used in only 1 study in patients with SSc, and an impairment of the FSFI in all domains, including desire and satisfaction, was observed (4). However, because only an abstract is available, no further information on the extent of the reduction is available. Similar to the results of our study, lubrication and frequency and intensity of orgasms were also found to be impaired by Bhadauria et al (3), whereas pain was also identified as a problem in the study by Sampaio-Barrros et al (1). However, the degree to which these complaints occurred cannot be compared with our data, because in these studies self-provided questionnaires were used. Bhadauria et al (3) reported a decrease of desire for intercourse in 57% of 60 women with SSc, but participants were not asked about sexual behaviors other than intercourse. In contrast, in our study desire and satisfaction were not impaired. In none of these studies was a comparison with controls made.

Sexually related personal distress, which is considered an important feature of sexual dysfunction (14), was never evaluated in SSc. In our study, an evident increase as compared with controls was seen. In a population-based sample of middle-aged Australian women (7), 34 (21%) of 166 participants with sexual problems showed increased distress.

In a population-based sample of heterosexual American women ages 18–60 years, it was found that sexual problems were associated with distress about the relationship (36). Furthermore, sexual distress was related to both emotional well-being and the emotional relationship with the partner. These associations were partly also demonstrated by our data. Furthermore, no disease-specific variable was found to be associated with sexual functioning or sexual distress in our study. We can conclude that sexual functioning and sexual distress in women with SSc are more strongly associated with psychological characteristics and to a lesser degree with disease-specific characteristics. Considering the cross-sectional design, the findings of our study have to be interpreted with caution, because the correlational nature of the findings regarding SSc, sexual functioning, depression, and marital distress precludes conclusions concerning the causality of relationships between these variables.

Patients with limited SSc reported as many problems with sexual function as patients with diffuse disease. This finding is in accordance with the outcomes of Guerriere et al (4), who found that FSFI scores were unrelated to disease classification. Moreover, in both that study and the present research, no relationship between disease severity and sexual function was found, whereas depressive symptoms were. This would imply that in daily clinical practice, attention should be paid to sexual functioning in all women with SSc, irrespective of the subtype and severity of the disease, and attention should be paid to possible depressive symptoms.

Health care professionals, however, tend to neglect patients' sexual health; often they find it difficult to address sexual issues. In a study performed in a medical and nursing staff of a nephrology department, 86% of the professionals admitted not giving sufficient attention to and 92% admitted never initiating discussion about sexual issues with patients (37). In a questionnaire survey on views of multidisciplinary health professionals about discussing sexual issues with patients, most respondents (90%) agreed that addressing sexual issues ought to be part of the holistic care of patients (38). However, most staff (86%) was found to be poorly trained and most (94%) were unlikely to discuss sexual issues with their patients. This suggests that training in sexuality and sexual issues should be implemented as part of the training of health care professionals. In a study on the effects of RA on sexual activity, 37 patients (66%) had never been asked by any health professional about the impact of their disease on their sexuality, and 29 (59%) of 49 said they would not talk to someone if they had a problem (32). Our results showed that only 6 (16%) of the 37 patients with SSc felt the need to talk with someone about their sexual problems, and if they did want to talk to someone, they preferred someone who was not a health professional. The impact of illness on sexuality thus seems to be a problem that both patients and health professionals find hard to discuss.

Some patients with SSc may have found their own way of coping with sexual problems. Still, patients may benefit from treatment or guidance by their rheumatologist or rheumatology nurse. Saad and Behrendt stated that an open discussion with patients with SSc on their concerns about sexuality, promoting communication between partners and proper information, is essential in patient care (39).

Specific suggestions in order to enhance comfort during sexual activity are usage of lubricants, providing a warm environment, avoiding meals and elevating the bed prior to sexual activity, and re-evaluating medical therapy if needed. Although alleviation of problems thus can be achieved, a holistic approach to impaired sexual function in patients with SSc is highly recommended. Referral to a gynecology department should be considered, because a thorough physical examination may provide essential information.

This study had a number of limitations. First, selection bias in the group of patients as well as the controls cannot be excluded. We could not make a comparison of those who refused participation because we did not gather information on the characteristics of the patients who declined participation or did not respond. Moreover, despite the fact that the response rates were comparable with those in other studies on sexual functioning, the sample sizes of patients and healthy controls were relatively small. Second, it would have been helpful to know the exact reasons for sexual inactivity in patients and controls. Unfortunately, no information was obtained about the length of the relationships between the patients and their partners, so the influence of the length of the relationship on sexual function could thus not be evaluated. Finally, we failed to ask our participants whether a rheumatologist had ever inquired about sexual problems. This would have been illustrative in demonstrating how often the subject was raised in an outpatient clinic setting. Despite these limitations, this study may contribute to a better understanding of the impact of SSc on well-being, as it is the first study to our knowledge to compare sexual function in patients with SSc with that of healthy controls. Moreover, no study to date has used multiple validated measures to evaluate sexual function in SSc.

In conclusion, impaired sexual function and more sexual distress are found in patients with SSc compared with healthy controls. Although our patients are reticent about discussing sexual problems with their rheumatologist, the subject should not be avoided during consultation. Inquiry about sexuality and offering the opportunity to identify problems will improve the quality of patient care. Patients may benefit from referral to proper counseling once sexual problems are openly discussed.

AUTHOR CONTRIBUTIONS

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. Dr. Schouffoer had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Schouffoer, van der Marel, ter Kuile, Weijenborg, C. W. Vliet Vlieland, T. P. M. Vliet Vlieland, van Laar.

Acquisition of data. Schouffoer, van der Marel, Voskuyl, C. W. Vliet Vlieland, van Laar.

Analysis and interpretation of data. Schouffoer, van der Marel, ter Kuile, Weijenborg, Voskuyl, T. P. M. Vliet Vlieland.

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