Neurourology and Urodynamics
Female Sexual Dysfunction in Multiple Sclerosis: Results of a Survey Among Dutch Urologists and Patients Jeroen R. Scheepe,1* Mustafa Alamyar,1 Hester Pastoor,2 Rogier Q. Hintzen,3 and Bertil F.M. Blok1
1
Department of Urology and Pediatric Urology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands 2 Department of Gynecology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands 3 Department Neurology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands
Aims: The objective of this study was to determine the prevalence of female sexual dysfunction (FSD) in patients with Multiple Sclerosis (MS) in one of the leading MS centers in the Netherlands. Furthermore, we evaluated the practice patterns of members of the Dutch Urological Association (DUA) with respect to FSD. Methods: A self-administered Webbased questionnaire for physicians was mailed to all 467 members of the DUA. The questions covered different topics in female sexuality. For the patient survey the Female Sexual Function Index (FSFI) was used. Results: The response rate of the physicians survey was 42% (n ¼ 194). Sixty-one percent of the responders reported to ask their female patients about their sexual function. Thirty-nine percent of the physicians did not ask their patients about sexuality. The majority indicated that they lacked knowledge on FSD or found discussing sexuality not relevant for their practice. The response rate of the patient survey was 28% (n ¼ 85). According to the FSFI questionnaire 32% of the sexually active MS patients experienced FSD. Women with FSD scored low on all subdomains of the FSFI questionnaire. In particular, desire, arousal, lubrication, and the ability to achieve orgasm were affected. Conclusions: The prevalence of FSD in MS patients in our center is about 32%. Overall, many members of the DUA do not screen for sexual dysfunction in female patients because of lack of knowledge on FSD. Better and more structured education of urologists and residents in urology on FSD in The Netherlands is urgently needed. Neurourol. Urodynam. # 2015 Wiley Periodicals, Inc. Key words: female sexual dysfunction; multiple sclerosis; practice pattern
BACKGROUND
Female sexual dysfunction (FSD) is a complex medical problem with several physiological and psychosocial components. According to the National Health and Social Life Survey of 1992, sexual dysfunction is more widespread in women than in men.1 In comparison to male sexual dysfunction, FSD is difficult to investigate and consequently less understood. In an international consensus on FSD in 2000, researchers and clinical doctors from various specialisms classified FSD as problems with sexual desire, sexual arousal, orgasm, and sexual pain that cause personal distress.2 Female sexual function is often disturbed due to neurological diseases like multiple sclerosis (MS).3 MS is one of the most frequently occurring progressive and debilitating neurological diseases in primarily young adults. It is an inflammatory neurodegenerative condition of the central nervous system that affects more women than men. For female patients with MS, the prevalence for FSD is up to 74%.4–7 The prevalence of FSD in the Dutch female MS population is currently not known. The objective of this study was to determine the prevalence of FSD in one of the leading MS centers of The Netherlands. Furthermore, we want to determine the practice pattern of members (urologists and residents) of the Dutch Urological Association (DUA) concerning FSD. METHODS
This cross-sectional study was carried out by the department of Urology at the Erasmus Medical Center, Rotterdam, the Netherlands between May 2013 and August 2013. We performed one Web-based survey among urologists and residents and one survey by mail among female MS patients. The study protocol was approved by the Ethics Committee for #
2015 Wiley Periodicals, Inc.
Medical Research of the Erasmus Medical Centre University Hospital, Rotterdam (METC 2013-223). Physician Survey
Four hundred and sixty-seven urologists and residents in urology, registered members of the DUA, were invited to take part in a Web-based questionnaire survey. A 13-item questionnaire among urologists and residents was designed by the authors (M.A. and J.R.S.) in collaboration with a psychologist-sexologist (H.P.). The tool used for the online survey was from VDR-web, Inc., (www.enquetemaken.be, Belgium). The questions covered different topics (e.g., possible barriers to discuss sexual issues, current practice) on female sexuality. Demographic data included age, sex, medical degree (urologist or resident), and type of practice. All data were collected anonymously. The Web-based survey was closed after 3 months of response time. Patient Survey
A total of 674 MS patients who were followed-up and treated at the MS center within the department of Neurology and/or at the Urology department of the Erasmus Medical Centre were Prof. Christopher Chapple led the peer-review process as the Associate Editor responsible for the paper. Potential conflicts of interest: Nothing to disclose. Correspondence to: Jeroen R. Scheepe, MD, PhD, Department of Urology and Pediatric Urology, Erasmus Medical Center Rotterdam, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands. E-mail: [email protected] Received 6 July 2015; Accepted 1 September 2015 Published online in Wiley Online Library (wileyonlinelibrary.com). DOI 10.1002/nau.22884
2
Scheepe et al.
screened for participation in the study (Fig. 1). The following inclusion criteria were specified: female gender, age 18– 65 years, and definitive diagnosis of MS disease. Exclusion criteria included the following: male gender, age >0.65 years, known written refusal to participate in any clinical study, residing in a residential care home due to disease severity and psychiatric disease. All subjects received a patient information form, an informed consent form, the questionnaires, and a free post return envelope. For the assessment of female sexual function the Female Sexual Function Index (FSFI) was used.8 The FSFI is validated within a Dutch population with good internal stability and consistency and an excellent discrimination validity to predict the presence or absence of sexual dysfunction.9In addition, we used a third 6-item self-administered questionnaire. The selfadministered questionnaire was designed to collect data on medical history, drug use, and demographic characteristics, which were height, weight, marital status, and current treatment for FSD. The FSFI is a 19-item questionnaire covering 6 domains of female sexuality: Sexual desire (2 items), arousal (4 items), lubrication (4 items), orgasm (3 items), satisfaction (3 items), and pain (3 items). Total subdomain scores were derived by adding the values for each item in the subdomain, and by multiplying this by a subdomain factor weight. Total FSFI score is calculated by adding the subdomain scores. This score ranges from 2 to 36 and a score below 26.5 indicates female sexual dysfunction.10
Statistical Analysis
Statistical analysis for both surveys was performed using Statistical Package for the Social Sciences version 21 (SPSS, Inc., Chicago, IL). The data was presented using mean and standard deviation. Differences in frequencies and quantitative variables were studied using the Pearson x2-test, Fisher exact test, and the Mann–Whitney U-test. Spearman rank correlation coefficients were used to determine relationships between variables and FSFI scores. A two-sided P-value 0.05). More female physicians asked about sexual function than male physicians (70% vs. 57%), but this difference was not statistically significant (P > 0.05). The distribution of physicians working in university hospitals and physicians working in district general hospitals asking female patients about sexual problems was comparable. Seventy-four physicians (39%) who did not ask their patients about sexuality were asked for their reasons (Table II). A majority, 48%, indicated that they lacked knowledge on female sexuality as one of the reasons for not addressing female sexuality. Another 24% found discussing sexuality not relevant for their practice. A time constraint was mentioned by 20%. Personal difficulties in bringing the subject of sexuality up and discussing it, was the least cited reason (8%). On the subject of who (patient or physician) takes the initiative to discuss sexuality, 82% of the female versus 63% of the male doctors agreed with the statement: ‘‘I take initiative when bringing the subject of sexuality up’’ (P < 0.05). TABLE I. Respondent Characteristics Online Survey
Fig. 1. Flowchart of selected women for patient survey.
Neurourology and Urodynamics DOI 10.1002/nau
Age 50 years 50 years Gender Male Female Medical degree Urologist Resident Hospital type District general hospital University hospital
n
%
131 61
68.2 31.8
125 67
65.1 34.9
144 48
74.7 25.3
133 59
69.3 30.7
3
FSD in MS in The Netherlands TABLE II. Reasons to Refrain from Asking about Sexuality Gender Total Men I don’t have enough time My knowledge is insufficient I find it not relevant I find it difficult
16 35 17 6
TABLE III. Demographic Characteristics Sexually Active and Inactive Women
Medical degree
Female
Urologist
Resident
4 10 1 0
12 25 15 5
4 10 2 1
12 25 16 6
Significant differences were found in response to the question of whether they find it easier to discuss sexuality in a male or a female patient. Of the female physicians 76% versus 66% of the male physicians cited that they were comfortable with asking this in both sexes. Significantly, more male (28%) than female (12%) doctors found asking questions about sexuality in male patients easier. No significant differences were seen between urologists and residents (P > 0.05). In this survey, we asked the physicians if they have more than five female MS consultation per year. Ninety-three (48%) physicians see more than five female MS patients per year. We asked this group of 93 urologists if they address the subject of female sexual function with their patients. Only 57% (n ¼ 53) discussed this topic. Lack of time (44%) was the primary reason not to ask about FSD followed by little knowledge (39%) on female sexuality. Patient Survey
A total of 300 women with MS were invited to complete the questionnaires by postal mail. We received 85 (28%) questionnaires of which 61 were eligible for analysis. Reasons for excluding 24 questionnaires were death of the patient (n ¼ 9), incorrect postal address (n ¼ 12), and incomplete questionnaires (n ¼ 3). Thus, 61 women completed the anonymous patient survey. The demographic characteristics are shown in Table III. The disease course was in 76.3% of the patients relapsing-remitting (RR), 20.3% secondary progressive (SP), and 3.4% primary progressive (PP). Frequency of sexual activity and hormonal status were not queried. The demographic characteristics of the sexually active and inactive subjects are displayed in Table III. Eleven (18%) women were sexually inactive and therefore excluded from the FSFI questionnaire. According to the FSFI questionnaire 16 (32%) of all 50 sexually active women experienced FSD. A FSFI score below 26.5 is considered as FSD. The demographic characteristics of the women with and without FSD are given in Table IV. Women with FSD scored low on all subdomains of the FSFI questionnaire. In particular, desire, arousal, lubrication, and the ability to achieve orgasm were affected. The distribution of the FSFI scores per subdomain is presented in Figure 2. Correlation analyses between age, disease duration, age of MS onset, and FSFI subscale scores were performed using the Spearman rank correlation test (Table V). There was a significant negative correlation between decreased libido and age and between decreased libido and age of disease onset. A significant positive correlation was shown between decreased arousal and BMI and between decreased lubrication and disease duration. DISCUSSION
The prevalence of FSD is often underestimated by health professionals and is not commonly acknowledged and Neurourology and Urodynamics DOI 10.1002/nau
Age BMI Ethnicity Caucasian Non-caucasian Disease duration Age disease onset Disease course RR SP PP Stable relationship Under treatment for SD Urological complaints
Active
Inactive
n = 50
n = 11
44.3 9.6 24.5 4.3
46.6 12.8 25.8 4.1
47 3 10.3 7.2 33.7 10.5
11 0 9.4 7.6 37.2 11.3
39 7 2 47 2 28
6 5 0 5 0 10
discussed with women.1 According to the National Health and Social Life Survey of 1992, FSD is present in more than 40% of women.1 In a computer assisted self-interview study by Mercer et al.,11 more than half of the female participants reported at least one sexual problem. Although FSD is a highly prevalent disorder women encounter barriers to discussing this with their doctor. These barriers should be broken down by physicians but, unfortunately, physicians frequently do not discuss sexual function with women.12 Female sexual function can be disturbed by neurological diseases such as multiple sclerosis (MS).3 In the physician survey, most members of the DUA ask their female patients about their sexual function. This is in contrast with surveys among members of the American Urogynaecologic Society (AUGS) and British Society of Urogynaecology (BSUG).12,14 These surveys showed that respectively only 22% and 0% ask their female patients about FSD in their daily practice. When asked for the reason, almost half of the DUA members mentioned lack of knowledge on this topic as the main reason for not addressing this subject, while members of the AUGS and BSUG reported lack of time as the primary reason. In our survey a time constraint was given by only 20% of the respondents. A small number of DUA members also reported that addressing female SD is not meaningful in their practice. The present survey had a separate field for comments and other reasons for not asking female patients about their sexual function. Some respondents mentioned that female sexuality is a topic that they often forget to ask about and other comments were that FSD should be handled by a gynecologist and not by an urologist. TABLE IV. Demographic Characteristics Women with MS Disease and FSD and without FSD
Age BMI Ethnicity Caucasian Non-caucasian Disease duration Age disease onset Stable relationship Urological complaints
FSD n ¼ 16
No FSD n ¼ 34
45.5 11.1 23.7 3.0
42.5 9.0 24.8 4.8
15 1 11.5 6.8 32.9 9.7 15 8
32 2 10.0 7.7 33.5 10.9 33 9
4
Scheepe et al.
Fig. 2. FSFI distribution per subdomain in women with MS and FSD and without FSD.
In 2009, a comparable survey was conducted by Bekker and colleagues13 among members of the DUA. This study showed that 40% of the respondents did not find female SD meaningful enough to discuss in urological practice, while 23% cited insufficient knowledge and 18% stated lack of time. A further 11% said that they found this subject difficult to bring up. There were no statistical differences in medical degree, type of practice, gender, or age. In contrast to the study of Bekker et al.13 our survey suggested that female physicians were more willing to address female sexuality than their male colleagues, although this difference was not statistically significant. The reason for this might be that female physicians have a different and maybe better mutual contact and understanding with their female patients than their male colleagues. The most important outcome of the physician survey is the lack of knowledge on FSD in more than 40% of the respondents. This is not in accordance with the data of Bekker et al.13 from 6 years ago. In their survey only 23% of the respondents cited insufficient knowledge as a reason not to address FSD. This is in contrast with our data while the response rates in both surveys were comparable. The reason for the increase in insufficient knowledge on FSD among the members of the DUA within 6 years is unclear. It is known that women want their doctors to be more open with them when discussing sexuality15 and therefore we postulate that postgraduate education of urologists and urological residents in the Netherlands should focus
more on FSD in urological patients. One might speculate that this decrease in knowledge is due to a shift of priorities within the urological landscape. This has led to a disproportionate growth of oncological activities within the field of urology. The average urological resident gets overwhelmed with oncourology and robot-surgery at the expense of functional and neuro-urology. On the other hand, a shift in the interests of urological residents towards other subdomains of urology like andrology and functional/pediatric urology has been noticed in our institution in recent years. This trend might enhance the interest in functional and neuro-urology in the future. The prevalence of FSD among MS patients between 18 and 65 years of age was 32% using the FSFI questionnaire. This is slightly lower compared to the study by Tzortzis et al.16 (35%, study size ¼ 63 women) who used the same questionnaire. In the Netherlands, the prevalence of FSD in the general female population between 15 and 71 years of age is estimated to be 27%.17 This relatively high prevalence rate might be attributed to the fact that young women between 15 and 20 years of age will report more sexual problems than older women. Young women will probably have less sexual experience and they will probably not have a regular partner.17 Zivadinov et al.18 studied the association between symptoms of sexual dysfunction and clinical type of MS. They found that sexual dysfunction was more often present in females with RR-MS but not with the PP-MS and SP-MS. This was not observed in our survey which might be attributed to our
TABLE V. Correlation Analysis Between Variables and FSFI Subdomains Decreased libido
Age BMI MS disease duration Age of MS onset
Decreased arousal
Decreased lubrification
Decreased orgasm
Decreased satisfaction
Increased pain
r
p
r
p
r
p
r
p
r
p
r
p
0.44 0.04 0.12 0.55
0.043 0.448 0.342 0.016
0.01 0.46 0.03 0.12
0.492 0.042 0.465 0.332
0.13 0.15 0.61 0.16
0.339 0.291 0.008 0.29
0.18 0.03 0.34 0.27
0.245 0.461 0.107 0.332
0.35 0.31 0.06 0.167
0.095 0.129 0.418 0.254
0.17 0.047 0.175 0.056
0.269 0.434 0.266 0.422
Neurourology and Urodynamics DOI 10.1002/nau
FSD in MS in The Netherlands relatively low sample size. In our study total FSFI subdomain scores showed no significant differences between RR-MS, PP-MS, and SP-MS patients. In a cross-sectional study Fragala et al. investigated the determinants of sexual impairment in MS in patients with lower urinary tract dysfunction.19 They suggested that bladder dysfunction secondary to MS might be a significant proxy of sexual dysfunction in men and women. In another study the same group investigated the relationship between urodynamic findings and sexual function in MS patients.20 The authors concluded that the presence of neurogenic bladder dysfunction is closely related to the presence of sexual dysfunction. In our cohort half of the patients with FSD had urological problems while 26% of the patients without FSD had signs of bladder dysfunction. There is undoubtedly a relationship between lower urinary tract dysfunction and FSD but on the other hand, the absence of urological problems does not exclude the existence of sexual dysfunction. A limitation of our patient survey is the low response rate. Most surveys via postal mail about sexuality are characterized by low response rates,21 whereas studies that invite female patients to participate during their regular visit to hospital have a higher response. Furthermore, we were restricted from sending a postal reminder because of ethical hospital regulations regarding patient privacy and safety. Nevertheless, all women experiencing FSD had significantly lower FSFI scores in each subdomain. Therefore, we can conclude that MS has a negative impact on all FSFI subdomains. Another limitation of this study is that the questionnaire in the physician survey was not validated and contained dichotomic answers. Furthermore, participants may tend to overestimate their attitude to FSD resulting in a reporting bias. This is inherent to almost all surveys. Our survey was anonymous and therefore this bias might be limited. The FSFI questionnaire is a reliable tool for the assessment of FSD, exploring sexual symptoms in 6 descriptive domains and 19 subdomains.7 In contrast to sexual dysfunction in men no specific data are available about women’s sexual expectations and the importance of sexuality in their life.22,23 Unfortunately, we did not measure the Female Sexual Distress Scale (FSDS)9 and therefore our data might suggest a relatively low prevalence of FSD in Dutch patients with MS while the patients0 burden due to sexuality issues might be distinct. The results of this study show that the majority of the members of the DUA ask their female patients about sexual health matters. An important reason for not addressing sexuality is insufficient knowledge on FSD. Compared with the study of Bekker et al.,13 this lack of knowledge has grown over the past 6 years and therefore more postgraduate education for urologists and urological residents in the Netherlands is urgently needed. In urological care, there is a need for better and more education on the subject of female sexual dysfunction. The prevalence of FSD in our cohort of MS patients is about 32% which is slightly lower compared to other studies in other countries possibly due to the relatively low response rate. ACKNOWLEDGMENTS
The authors thank Mrs. Leonieke Ravestein and Mrs. Yvonne Derijcke from the MS center of the Erasmus MC for their great effort and help in collecting the questionnaires and acquisition of the data.
Neurourology and Urodynamics DOI 10.1002/nau
5
AUTHORS’ CONTRIBUTIONS
JRS participated in the conception and design of the study, performed analysis of the data, and performed drafting of the manuscript. MA participated in the conception and design of the study, performed acquisition and analysis of the data, and participated in critical revision of the manuscript. HP participated in the conception of the study and participated in critical revision of the manuscript. RQH participated in critical revision of the manuscript. BFM performed analysis of the data and participated in critical revision of the manuscript.
REFERENCES 1. Laumann EO, Paik A, Rosen RC. Sexual dysfunction in the US: Prevalence and predictors. JAMA 1999;281:537–44. 2. Basson R, Berman J, Burnett A, et al. Report on the international consensus development conference on female sexual dysfunction: Definitions and classifications. J Urol 2000;163:888–93. 3. Kessler TM, Fowler CJ, Panicker JN. Sexual dysfunction in multiple sclerosis. Expert Rev Neurother 2009;9:341–50. 4. Ashtari F, Rezvani R, Afshar H. Sexual dysfunction in women with multiple sclerosis: Dimensions and ntributory factors. J Res Med Sci 2014;19:228–33. 5. Zorzon M, Zivadinov R, Bosco A, et al. Sexual dysfunction in multiple sclerosis: A case–control study. I. Mult Scler 1999;5:418–27. 6. Hulter BM, Lundberg PO. Sexual function in women with advanced multiple sclerosis. J Neurol Neurosurg Psychiatry 1995;59:83–6. 7. Bronner G, Elran E, Golomb J, et al. Female sexuality in multiple sclerosis: The multidimensional nature of the problem and the intervention. Acta Neurol Scand 2010;121:289–301. 8. Rosen R, Brown C, Heiman J, et al. The female sexual function index (FSFI): A multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther 2000;26:191–208. 9. ter Kuile MM, Brauer M, Laan E. The female sexual function index (FSFI) and the female sexual distress scale (FSDS): psychometric properties within a Dutch population. J Sex Marital Ther 2006;32:289–304. 10. Wiegel M, Meston C, Rosen R. The female sexual function index (FSFI): Crossvalidation and development of clinical cutoff scores. J Sex Marital Ther 2005;31:1–20. 11. Mercer CH, Fenton KA, Johnson AM, et al. Sexual function problems and help seeking behaviour in Britain: National probability sample survey. BMJ 2003;327:426–27. 12. Roos AM, Thakar R, Sultan AH, et al. Female sexual dysfunction: Are urogynaecologists ready for it? Int Urogynaecol J 2009;89–101. 13. Bekker M, Beck J, Putter H, et al. The place of female sexual dyfunction in the urological practice: Results of a Dutch survey. J Sex Med 2009;6:2979–87. 14. Pauls RN, Kleeman SD, Segal JL, et al. Practice patterns of physician members of the American urogynecologic society regarding female sexual dysfunction: Results of a national survey. Int Urogyn J Pelvic Floor Dysfunction 2005;16: 460–07. 15. Houge DR. Sex problems in family practice. Fam Pract Res J 1998;7:135–40. 16. Tzotzis V, Skriapas K, Hadjigeorgiou G, et al. Sexual dysfunction in newly diagnosed multiple sclerosis women. Mult Scler 2008;14:561–63. 17. Kedde H. Prevalentie en samenhangende factoren. Tijdschrift voor Seksuologie 2012;36:98–108. 18. Zivadinov R, Zorzon M, Bosco A, et al. Sexual dysfunction in multiple sclerosis: II. Mult Scler 1999;5:428–31. 19. Fragal a E, Privitera S, Giardina R, et al. Determinants of sexual impairment in multiple sclerosis in male and female patients with lower urinary tract dysfunction: Results from an Italian cross-sectional study. J Sex Med 2014;11: 2406–13. 20. Fragal a E, Russo GI, Di Rosa A, et al. Relationship between urodynamic findings and sexual function in multiple sclerosis patients with lower urinary tract dysfunction. Eur J Neurol 2015;22:485–92. 21. Drane JW, Richter D, Stoskopf C. Improved imputation of non-responses to mailback questionnaires. Stat Med 1993;12:283–88. 22. Perimenis P, Roumeguere T, Heidler H, et al. Evaluation of patient expectations and treatment satisfaction after 1-year tadalafil therapy for erectile dysfunction: The DETECT study. J Sex Med 2009;6:257–67. 23. Bisseriex H, Guinet-Lacoste A, Chevret-Measson M, et al. Sexual Dysfunction Management and Expectations Assessment in Multiple SclerosiseFemale (SEA-MS-F): Creation and validation of a specific questionnaire. J Sex Med 2014;11:2955–65.
Female Sexual Dysfunction in Multiple Sclerosis: Results of a Survey Among Dutch Urologists and Patients Jeroen R. Scheepe,1* Mustafa Alamyar,1 Hester Pastoor,2 Rogier Q. Hintzen,3 and Bertil F.M. Blok1
1
Department of Urology and Pediatric Urology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands 2 Department of Gynecology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands 3 Department Neurology, Erasmus Medical Center Rotterdam, Rotterdam, The Netherlands
Aims: The objective of this study was to determine the prevalence of female sexual dysfunction (FSD) in patients with Multiple Sclerosis (MS) in one of the leading MS centers in the Netherlands. Furthermore, we evaluated the practice patterns of members of the Dutch Urological Association (DUA) with respect to FSD. Methods: A self-administered Webbased questionnaire for physicians was mailed to all 467 members of the DUA. The questions covered different topics in female sexuality. For the patient survey the Female Sexual Function Index (FSFI) was used. Results: The response rate of the physicians survey was 42% (n ¼ 194). Sixty-one percent of the responders reported to ask their female patients about their sexual function. Thirty-nine percent of the physicians did not ask their patients about sexuality. The majority indicated that they lacked knowledge on FSD or found discussing sexuality not relevant for their practice. The response rate of the patient survey was 28% (n ¼ 85). According to the FSFI questionnaire 32% of the sexually active MS patients experienced FSD. Women with FSD scored low on all subdomains of the FSFI questionnaire. In particular, desire, arousal, lubrication, and the ability to achieve orgasm were affected. Conclusions: The prevalence of FSD in MS patients in our center is about 32%. Overall, many members of the DUA do not screen for sexual dysfunction in female patients because of lack of knowledge on FSD. Better and more structured education of urologists and residents in urology on FSD in The Netherlands is urgently needed. Neurourol. Urodynam. # 2015 Wiley Periodicals, Inc. Key words: female sexual dysfunction; multiple sclerosis; practice pattern
BACKGROUND
Female sexual dysfunction (FSD) is a complex medical problem with several physiological and psychosocial components. According to the National Health and Social Life Survey of 1992, sexual dysfunction is more widespread in women than in men.1 In comparison to male sexual dysfunction, FSD is difficult to investigate and consequently less understood. In an international consensus on FSD in 2000, researchers and clinical doctors from various specialisms classified FSD as problems with sexual desire, sexual arousal, orgasm, and sexual pain that cause personal distress.2 Female sexual function is often disturbed due to neurological diseases like multiple sclerosis (MS).3 MS is one of the most frequently occurring progressive and debilitating neurological diseases in primarily young adults. It is an inflammatory neurodegenerative condition of the central nervous system that affects more women than men. For female patients with MS, the prevalence for FSD is up to 74%.4–7 The prevalence of FSD in the Dutch female MS population is currently not known. The objective of this study was to determine the prevalence of FSD in one of the leading MS centers of The Netherlands. Furthermore, we want to determine the practice pattern of members (urologists and residents) of the Dutch Urological Association (DUA) concerning FSD. METHODS
This cross-sectional study was carried out by the department of Urology at the Erasmus Medical Center, Rotterdam, the Netherlands between May 2013 and August 2013. We performed one Web-based survey among urologists and residents and one survey by mail among female MS patients. The study protocol was approved by the Ethics Committee for #
2015 Wiley Periodicals, Inc.
Medical Research of the Erasmus Medical Centre University Hospital, Rotterdam (METC 2013-223). Physician Survey
Four hundred and sixty-seven urologists and residents in urology, registered members of the DUA, were invited to take part in a Web-based questionnaire survey. A 13-item questionnaire among urologists and residents was designed by the authors (M.A. and J.R.S.) in collaboration with a psychologist-sexologist (H.P.). The tool used for the online survey was from VDR-web, Inc., (www.enquetemaken.be, Belgium). The questions covered different topics (e.g., possible barriers to discuss sexual issues, current practice) on female sexuality. Demographic data included age, sex, medical degree (urologist or resident), and type of practice. All data were collected anonymously. The Web-based survey was closed after 3 months of response time. Patient Survey
A total of 674 MS patients who were followed-up and treated at the MS center within the department of Neurology and/or at the Urology department of the Erasmus Medical Centre were Prof. Christopher Chapple led the peer-review process as the Associate Editor responsible for the paper. Potential conflicts of interest: Nothing to disclose. Correspondence to: Jeroen R. Scheepe, MD, PhD, Department of Urology and Pediatric Urology, Erasmus Medical Center Rotterdam, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands. E-mail: [email protected] Received 6 July 2015; Accepted 1 September 2015 Published online in Wiley Online Library (wileyonlinelibrary.com). DOI 10.1002/nau.22884
2
Scheepe et al.
screened for participation in the study (Fig. 1). The following inclusion criteria were specified: female gender, age 18– 65 years, and definitive diagnosis of MS disease. Exclusion criteria included the following: male gender, age >0.65 years, known written refusal to participate in any clinical study, residing in a residential care home due to disease severity and psychiatric disease. All subjects received a patient information form, an informed consent form, the questionnaires, and a free post return envelope. For the assessment of female sexual function the Female Sexual Function Index (FSFI) was used.8 The FSFI is validated within a Dutch population with good internal stability and consistency and an excellent discrimination validity to predict the presence or absence of sexual dysfunction.9In addition, we used a third 6-item self-administered questionnaire. The selfadministered questionnaire was designed to collect data on medical history, drug use, and demographic characteristics, which were height, weight, marital status, and current treatment for FSD. The FSFI is a 19-item questionnaire covering 6 domains of female sexuality: Sexual desire (2 items), arousal (4 items), lubrication (4 items), orgasm (3 items), satisfaction (3 items), and pain (3 items). Total subdomain scores were derived by adding the values for each item in the subdomain, and by multiplying this by a subdomain factor weight. Total FSFI score is calculated by adding the subdomain scores. This score ranges from 2 to 36 and a score below 26.5 indicates female sexual dysfunction.10
Statistical Analysis
Statistical analysis for both surveys was performed using Statistical Package for the Social Sciences version 21 (SPSS, Inc., Chicago, IL). The data was presented using mean and standard deviation. Differences in frequencies and quantitative variables were studied using the Pearson x2-test, Fisher exact test, and the Mann–Whitney U-test. Spearman rank correlation coefficients were used to determine relationships between variables and FSFI scores. A two-sided P-value 0.05). More female physicians asked about sexual function than male physicians (70% vs. 57%), but this difference was not statistically significant (P > 0.05). The distribution of physicians working in university hospitals and physicians working in district general hospitals asking female patients about sexual problems was comparable. Seventy-four physicians (39%) who did not ask their patients about sexuality were asked for their reasons (Table II). A majority, 48%, indicated that they lacked knowledge on female sexuality as one of the reasons for not addressing female sexuality. Another 24% found discussing sexuality not relevant for their practice. A time constraint was mentioned by 20%. Personal difficulties in bringing the subject of sexuality up and discussing it, was the least cited reason (8%). On the subject of who (patient or physician) takes the initiative to discuss sexuality, 82% of the female versus 63% of the male doctors agreed with the statement: ‘‘I take initiative when bringing the subject of sexuality up’’ (P < 0.05). TABLE I. Respondent Characteristics Online Survey
Fig. 1. Flowchart of selected women for patient survey.
Neurourology and Urodynamics DOI 10.1002/nau
Age 50 years 50 years Gender Male Female Medical degree Urologist Resident Hospital type District general hospital University hospital
n
%
131 61
68.2 31.8
125 67
65.1 34.9
144 48
74.7 25.3
133 59
69.3 30.7
3
FSD in MS in The Netherlands TABLE II. Reasons to Refrain from Asking about Sexuality Gender Total Men I don’t have enough time My knowledge is insufficient I find it not relevant I find it difficult
16 35 17 6
TABLE III. Demographic Characteristics Sexually Active and Inactive Women
Medical degree
Female
Urologist
Resident
4 10 1 0
12 25 15 5
4 10 2 1
12 25 16 6
Significant differences were found in response to the question of whether they find it easier to discuss sexuality in a male or a female patient. Of the female physicians 76% versus 66% of the male physicians cited that they were comfortable with asking this in both sexes. Significantly, more male (28%) than female (12%) doctors found asking questions about sexuality in male patients easier. No significant differences were seen between urologists and residents (P > 0.05). In this survey, we asked the physicians if they have more than five female MS consultation per year. Ninety-three (48%) physicians see more than five female MS patients per year. We asked this group of 93 urologists if they address the subject of female sexual function with their patients. Only 57% (n ¼ 53) discussed this topic. Lack of time (44%) was the primary reason not to ask about FSD followed by little knowledge (39%) on female sexuality. Patient Survey
A total of 300 women with MS were invited to complete the questionnaires by postal mail. We received 85 (28%) questionnaires of which 61 were eligible for analysis. Reasons for excluding 24 questionnaires were death of the patient (n ¼ 9), incorrect postal address (n ¼ 12), and incomplete questionnaires (n ¼ 3). Thus, 61 women completed the anonymous patient survey. The demographic characteristics are shown in Table III. The disease course was in 76.3% of the patients relapsing-remitting (RR), 20.3% secondary progressive (SP), and 3.4% primary progressive (PP). Frequency of sexual activity and hormonal status were not queried. The demographic characteristics of the sexually active and inactive subjects are displayed in Table III. Eleven (18%) women were sexually inactive and therefore excluded from the FSFI questionnaire. According to the FSFI questionnaire 16 (32%) of all 50 sexually active women experienced FSD. A FSFI score below 26.5 is considered as FSD. The demographic characteristics of the women with and without FSD are given in Table IV. Women with FSD scored low on all subdomains of the FSFI questionnaire. In particular, desire, arousal, lubrication, and the ability to achieve orgasm were affected. The distribution of the FSFI scores per subdomain is presented in Figure 2. Correlation analyses between age, disease duration, age of MS onset, and FSFI subscale scores were performed using the Spearman rank correlation test (Table V). There was a significant negative correlation between decreased libido and age and between decreased libido and age of disease onset. A significant positive correlation was shown between decreased arousal and BMI and between decreased lubrication and disease duration. DISCUSSION
The prevalence of FSD is often underestimated by health professionals and is not commonly acknowledged and Neurourology and Urodynamics DOI 10.1002/nau
Age BMI Ethnicity Caucasian Non-caucasian Disease duration Age disease onset Disease course RR SP PP Stable relationship Under treatment for SD Urological complaints
Active
Inactive
n = 50
n = 11
44.3 9.6 24.5 4.3
46.6 12.8 25.8 4.1
47 3 10.3 7.2 33.7 10.5
11 0 9.4 7.6 37.2 11.3
39 7 2 47 2 28
6 5 0 5 0 10
discussed with women.1 According to the National Health and Social Life Survey of 1992, FSD is present in more than 40% of women.1 In a computer assisted self-interview study by Mercer et al.,11 more than half of the female participants reported at least one sexual problem. Although FSD is a highly prevalent disorder women encounter barriers to discussing this with their doctor. These barriers should be broken down by physicians but, unfortunately, physicians frequently do not discuss sexual function with women.12 Female sexual function can be disturbed by neurological diseases such as multiple sclerosis (MS).3 In the physician survey, most members of the DUA ask their female patients about their sexual function. This is in contrast with surveys among members of the American Urogynaecologic Society (AUGS) and British Society of Urogynaecology (BSUG).12,14 These surveys showed that respectively only 22% and 0% ask their female patients about FSD in their daily practice. When asked for the reason, almost half of the DUA members mentioned lack of knowledge on this topic as the main reason for not addressing this subject, while members of the AUGS and BSUG reported lack of time as the primary reason. In our survey a time constraint was given by only 20% of the respondents. A small number of DUA members also reported that addressing female SD is not meaningful in their practice. The present survey had a separate field for comments and other reasons for not asking female patients about their sexual function. Some respondents mentioned that female sexuality is a topic that they often forget to ask about and other comments were that FSD should be handled by a gynecologist and not by an urologist. TABLE IV. Demographic Characteristics Women with MS Disease and FSD and without FSD
Age BMI Ethnicity Caucasian Non-caucasian Disease duration Age disease onset Stable relationship Urological complaints
FSD n ¼ 16
No FSD n ¼ 34
45.5 11.1 23.7 3.0
42.5 9.0 24.8 4.8
15 1 11.5 6.8 32.9 9.7 15 8
32 2 10.0 7.7 33.5 10.9 33 9
4
Scheepe et al.
Fig. 2. FSFI distribution per subdomain in women with MS and FSD and without FSD.
In 2009, a comparable survey was conducted by Bekker and colleagues13 among members of the DUA. This study showed that 40% of the respondents did not find female SD meaningful enough to discuss in urological practice, while 23% cited insufficient knowledge and 18% stated lack of time. A further 11% said that they found this subject difficult to bring up. There were no statistical differences in medical degree, type of practice, gender, or age. In contrast to the study of Bekker et al.13 our survey suggested that female physicians were more willing to address female sexuality than their male colleagues, although this difference was not statistically significant. The reason for this might be that female physicians have a different and maybe better mutual contact and understanding with their female patients than their male colleagues. The most important outcome of the physician survey is the lack of knowledge on FSD in more than 40% of the respondents. This is not in accordance with the data of Bekker et al.13 from 6 years ago. In their survey only 23% of the respondents cited insufficient knowledge as a reason not to address FSD. This is in contrast with our data while the response rates in both surveys were comparable. The reason for the increase in insufficient knowledge on FSD among the members of the DUA within 6 years is unclear. It is known that women want their doctors to be more open with them when discussing sexuality15 and therefore we postulate that postgraduate education of urologists and urological residents in the Netherlands should focus
more on FSD in urological patients. One might speculate that this decrease in knowledge is due to a shift of priorities within the urological landscape. This has led to a disproportionate growth of oncological activities within the field of urology. The average urological resident gets overwhelmed with oncourology and robot-surgery at the expense of functional and neuro-urology. On the other hand, a shift in the interests of urological residents towards other subdomains of urology like andrology and functional/pediatric urology has been noticed in our institution in recent years. This trend might enhance the interest in functional and neuro-urology in the future. The prevalence of FSD among MS patients between 18 and 65 years of age was 32% using the FSFI questionnaire. This is slightly lower compared to the study by Tzortzis et al.16 (35%, study size ¼ 63 women) who used the same questionnaire. In the Netherlands, the prevalence of FSD in the general female population between 15 and 71 years of age is estimated to be 27%.17 This relatively high prevalence rate might be attributed to the fact that young women between 15 and 20 years of age will report more sexual problems than older women. Young women will probably have less sexual experience and they will probably not have a regular partner.17 Zivadinov et al.18 studied the association between symptoms of sexual dysfunction and clinical type of MS. They found that sexual dysfunction was more often present in females with RR-MS but not with the PP-MS and SP-MS. This was not observed in our survey which might be attributed to our
TABLE V. Correlation Analysis Between Variables and FSFI Subdomains Decreased libido
Age BMI MS disease duration Age of MS onset
Decreased arousal
Decreased lubrification
Decreased orgasm
Decreased satisfaction
Increased pain
r
p
r
p
r
p
r
p
r
p
r
p
0.44 0.04 0.12 0.55
0.043 0.448 0.342 0.016
0.01 0.46 0.03 0.12
0.492 0.042 0.465 0.332
0.13 0.15 0.61 0.16
0.339 0.291 0.008 0.29
0.18 0.03 0.34 0.27
0.245 0.461 0.107 0.332
0.35 0.31 0.06 0.167
0.095 0.129 0.418 0.254
0.17 0.047 0.175 0.056
0.269 0.434 0.266 0.422
Neurourology and Urodynamics DOI 10.1002/nau
FSD in MS in The Netherlands relatively low sample size. In our study total FSFI subdomain scores showed no significant differences between RR-MS, PP-MS, and SP-MS patients. In a cross-sectional study Fragala et al. investigated the determinants of sexual impairment in MS in patients with lower urinary tract dysfunction.19 They suggested that bladder dysfunction secondary to MS might be a significant proxy of sexual dysfunction in men and women. In another study the same group investigated the relationship between urodynamic findings and sexual function in MS patients.20 The authors concluded that the presence of neurogenic bladder dysfunction is closely related to the presence of sexual dysfunction. In our cohort half of the patients with FSD had urological problems while 26% of the patients without FSD had signs of bladder dysfunction. There is undoubtedly a relationship between lower urinary tract dysfunction and FSD but on the other hand, the absence of urological problems does not exclude the existence of sexual dysfunction. A limitation of our patient survey is the low response rate. Most surveys via postal mail about sexuality are characterized by low response rates,21 whereas studies that invite female patients to participate during their regular visit to hospital have a higher response. Furthermore, we were restricted from sending a postal reminder because of ethical hospital regulations regarding patient privacy and safety. Nevertheless, all women experiencing FSD had significantly lower FSFI scores in each subdomain. Therefore, we can conclude that MS has a negative impact on all FSFI subdomains. Another limitation of this study is that the questionnaire in the physician survey was not validated and contained dichotomic answers. Furthermore, participants may tend to overestimate their attitude to FSD resulting in a reporting bias. This is inherent to almost all surveys. Our survey was anonymous and therefore this bias might be limited. The FSFI questionnaire is a reliable tool for the assessment of FSD, exploring sexual symptoms in 6 descriptive domains and 19 subdomains.7 In contrast to sexual dysfunction in men no specific data are available about women’s sexual expectations and the importance of sexuality in their life.22,23 Unfortunately, we did not measure the Female Sexual Distress Scale (FSDS)9 and therefore our data might suggest a relatively low prevalence of FSD in Dutch patients with MS while the patients0 burden due to sexuality issues might be distinct. The results of this study show that the majority of the members of the DUA ask their female patients about sexual health matters. An important reason for not addressing sexuality is insufficient knowledge on FSD. Compared with the study of Bekker et al.,13 this lack of knowledge has grown over the past 6 years and therefore more postgraduate education for urologists and urological residents in the Netherlands is urgently needed. In urological care, there is a need for better and more education on the subject of female sexual dysfunction. The prevalence of FSD in our cohort of MS patients is about 32% which is slightly lower compared to other studies in other countries possibly due to the relatively low response rate. ACKNOWLEDGMENTS
The authors thank Mrs. Leonieke Ravestein and Mrs. Yvonne Derijcke from the MS center of the Erasmus MC for their great effort and help in collecting the questionnaires and acquisition of the data.
Neurourology and Urodynamics DOI 10.1002/nau
5
AUTHORS’ CONTRIBUTIONS
JRS participated in the conception and design of the study, performed analysis of the data, and performed drafting of the manuscript. MA participated in the conception and design of the study, performed acquisition and analysis of the data, and participated in critical revision of the manuscript. HP participated in the conception of the study and participated in critical revision of the manuscript. RQH participated in critical revision of the manuscript. BFM performed analysis of the data and participated in critical revision of the manuscript.
REFERENCES 1. Laumann EO, Paik A, Rosen RC. Sexual dysfunction in the US: Prevalence and predictors. JAMA 1999;281:537–44. 2. Basson R, Berman J, Burnett A, et al. Report on the international consensus development conference on female sexual dysfunction: Definitions and classifications. J Urol 2000;163:888–93. 3. Kessler TM, Fowler CJ, Panicker JN. Sexual dysfunction in multiple sclerosis. Expert Rev Neurother 2009;9:341–50. 4. Ashtari F, Rezvani R, Afshar H. Sexual dysfunction in women with multiple sclerosis: Dimensions and ntributory factors. J Res Med Sci 2014;19:228–33. 5. Zorzon M, Zivadinov R, Bosco A, et al. Sexual dysfunction in multiple sclerosis: A case–control study. I. Mult Scler 1999;5:418–27. 6. Hulter BM, Lundberg PO. Sexual function in women with advanced multiple sclerosis. J Neurol Neurosurg Psychiatry 1995;59:83–6. 7. Bronner G, Elran E, Golomb J, et al. Female sexuality in multiple sclerosis: The multidimensional nature of the problem and the intervention. Acta Neurol Scand 2010;121:289–301. 8. Rosen R, Brown C, Heiman J, et al. The female sexual function index (FSFI): A multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther 2000;26:191–208. 9. ter Kuile MM, Brauer M, Laan E. The female sexual function index (FSFI) and the female sexual distress scale (FSDS): psychometric properties within a Dutch population. J Sex Marital Ther 2006;32:289–304. 10. Wiegel M, Meston C, Rosen R. The female sexual function index (FSFI): Crossvalidation and development of clinical cutoff scores. J Sex Marital Ther 2005;31:1–20. 11. Mercer CH, Fenton KA, Johnson AM, et al. Sexual function problems and help seeking behaviour in Britain: National probability sample survey. BMJ 2003;327:426–27. 12. Roos AM, Thakar R, Sultan AH, et al. Female sexual dysfunction: Are urogynaecologists ready for it? Int Urogynaecol J 2009;89–101. 13. Bekker M, Beck J, Putter H, et al. The place of female sexual dyfunction in the urological practice: Results of a Dutch survey. J Sex Med 2009;6:2979–87. 14. Pauls RN, Kleeman SD, Segal JL, et al. Practice patterns of physician members of the American urogynecologic society regarding female sexual dysfunction: Results of a national survey. Int Urogyn J Pelvic Floor Dysfunction 2005;16: 460–07. 15. Houge DR. Sex problems in family practice. Fam Pract Res J 1998;7:135–40. 16. Tzotzis V, Skriapas K, Hadjigeorgiou G, et al. Sexual dysfunction in newly diagnosed multiple sclerosis women. Mult Scler 2008;14:561–63. 17. Kedde H. Prevalentie en samenhangende factoren. Tijdschrift voor Seksuologie 2012;36:98–108. 18. Zivadinov R, Zorzon M, Bosco A, et al. Sexual dysfunction in multiple sclerosis: II. Mult Scler 1999;5:428–31. 19. Fragal a E, Privitera S, Giardina R, et al. Determinants of sexual impairment in multiple sclerosis in male and female patients with lower urinary tract dysfunction: Results from an Italian cross-sectional study. J Sex Med 2014;11: 2406–13. 20. Fragal a E, Russo GI, Di Rosa A, et al. Relationship between urodynamic findings and sexual function in multiple sclerosis patients with lower urinary tract dysfunction. Eur J Neurol 2015;22:485–92. 21. Drane JW, Richter D, Stoskopf C. Improved imputation of non-responses to mailback questionnaires. Stat Med 1993;12:283–88. 22. Perimenis P, Roumeguere T, Heidler H, et al. Evaluation of patient expectations and treatment satisfaction after 1-year tadalafil therapy for erectile dysfunction: The DETECT study. J Sex Med 2009;6:257–67. 23. Bisseriex H, Guinet-Lacoste A, Chevret-Measson M, et al. Sexual Dysfunction Management and Expectations Assessment in Multiple SclerosiseFemale (SEA-MS-F): Creation and validation of a specific questionnaire. J Sex Med 2014;11:2955–65.
