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ORIGINAL RESEARCH—OUTCOMES ASSESSMENT The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19: Reliability, Validity, and Factor Structure of the Persian Version Khadijeh Mohammadi, MSc,* Parvin Rahnama, PhD,* Ali Montazeri, PhD,† and Frederick W. Foley, PhD‡ *Department of Midwifery, Faculty of Nursing and Midwifery, Shahed University, Tehran, Iran; †Mental Health Research Group, Health Metrics Research Centre, Iranian Institute for Health Sciences Research, Academic Center for Education, Culture and Research, Tehran, Iran; ‡Ferkauf Graduate School of Psychology, Yeshiva University, New York, NY, USA DOI: 10.1111/jsm.12531
ABSTRACT
Introduction. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) was designed to assess the perceived influence of multiple sclerosis (MS) symptoms on sexual activity and satisfaction. Aims. This study aimed to translate and validate the MSISQ-19 in women with MS in Iran. Methods. The translation of the original questionnaire was carried out in accordance with a standard forward– backward procedure. Then, a sample of 226 married women with MS completed the questionnaire. Reliability was estimated using Cronbach’s alpha coefficient. Concurrent validity was assessed by comparison with the Female Sexual Function Index (FSFI), the Expanded Disability Status Scale (EDSS), and the Beck Depression Inventory-II (BDI-II). The factor structure of the questionnaire was extracted by performing exploratory factor analyses. All patients underwent a full neurologic examination. Main Outcome Measures. MSISQ-19 score was the main outcome measure. Results. The mean age of participants was 35.77 years (SD = 8.07), with mean disease duration of 1.84 years (SD = 0.79). Cronbach’s alpha coefficient was 0.90 for total MSISQ-19 score, with values of 0.85, 0.90, and 0.78 for the subscales assessing primary, secondary, and tertiary sexual dysfunction, respectively. The principal component analysis indicated a three-factor solution, similar to that found in the original validation study, that explained 63.0% of the total variance for women with MS. Scores on the MSISQ-19 and its subscales correlated with scores on the FSFI, EDSS, and BDI-II (all P < 0.01). Conclusion. In general, the findings suggest that the MSISQ-19 is a reliable and valid measure of sexual function among Iranian women with MS. However, further studies are needed to establish psychometric properties for male MS patients in Iran. Mohammadi K, Rahnama P, Montazer A, and Foley FW. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19: Reliability, validity, and factor structure of the Persian version. J Sex Med 2014;11:2225–2231. Key Words. Multiple Sclerosis; Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19); Reliability; Validity; Neurological Disease; Sexual Function
Introduction
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hronic neurological diseases such as multiple sclerosis (MS) are associated with significant physical disability [1] and psychiatric illness [2]. The incidence of MS has increased over the last 20 years in the Iranian population, and it is more prevalent in women than men in this community [3]. The prevalence of sexual dysfunction in MS © 2014 International Society for Sexual Medicine
patients has been shown to be very high, the rate varying between 40% and 70% [4]. The results of previous studies indicate that the prevalence of sexual dysfunction is higher in Iranian women with MS than in the general female population (55.3% vs. 31%) [5,6]. The etiology of sexual dysfunction in MS patients is multidimensional in nature and has multiple causal pathways [7]. The aspects of sexual J Sex Med 2014;11:2225–2231
2226 dysfunction in individuals with MS have been conceptualized in terms of primary, secondary, and tertiary sexual dysfunction [8,9]. Primary sexual dysfunction occurs as a result of MS-related neurologic changes in the central nervous system that directly impair sexual feelings or performance. It is characterized by symptoms including lack of sexual interest/desire, unpleasant genital sensations or genital numbness, problems with arousal and orgasm, inadequate vaginal lubrication, and difficulty getting or keeping a satisfactory erection. Secondary sexual dysfunction is a result of MS-related physical symptoms that do not involve the neural pathways of the genital system but affect sexual feelings indirectly; these may include fatigue, muscle weakness, spasticity, difficulty with mobility, body or hand tremors, lack of coordination, bladder and bowel dysfunction, side effects from MS medications, numbness, pain, burning, and cognitive difficulties. Tertiary sexual dysfunction results from disability-related psychological, emotional, social, and cultural issues that can affect sexual feelings. Internalized beliefs about adhering to gender role expectations in MS patients may trigger tertiary sexual symptoms including negative changes in self-image, mood, or body image; depression and anger; feeling less “sexy” or attractive; feeling less masculine or feminine; feeling less confident about one’s sexuality; fear of being rejected sexually; worries about sexually satisfying one’s partner; and difficulty communicating with one’s partner [4,10,11]. For health-care providers, obtaining information related to sexual concerns may be difficult due to reluctance to talk about sexuality on the part of both patients and providers [5]. Despite the fact that patients may desire their physician to initiate discussion about sexual concerns [12], physicians have traditionally viewed this as taboo and may avoid dealing with this issue [13]. In order to provide sexual counseling to those who may benefit, designing reliable, valid, sensitive, and specific screening measures to evaluate sexual problems is a necessary first step. In the case of a complex disabling disease, developing a questionnaire that assesses the relevant dimensions impacted by the disease is important for assessing sexual functioning [14]. One MS-specific scale has been developed to evaluate the perceived impact of MS symptoms on sexual health from a multidimensional perspective [11]. It is referred to as the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19). To the best of our knowledge, there J Sex Med 2014;11:2225–2231
Mohammadi et al. has previously been no instrument for assessing sexual dysfunction in MS patients who speak Persian. The aims of the study included (i) translation of the English version of the MSISQ-19 into Persian using standard back-translation techniques and (ii) evaluation of the reliability, construct validity, and concurrent validity of the Persian version of the MSISQ-19 in a sample of women diagnosed with MS in Iran. It was expected that Iranian health-care practitioners would be better able to create a suitable opportunity for sexual communication with their patients with MS using a Persian scale validated in Iran. Methods
Translation First, two independent translators translated the original scale into Persian. The translators and one of the authors compared the two translations and established a single provisional version. Second, the provisional version was translated into English by two other professional translators [15]. Finally, an expert committee consisting of the translators, the researchers, two sexologists, and a neurologist reviewed all the translations. The final backtranslated English version was evaluated based on semantic, idiomatic, experiential, and conceptual equivalence, and a final Persian version of the MSISQ was produced. To ensure face validity, the final Persian version was given to 10 patients who completed it and confirmed their understanding of the items. Design and Procedure Participants were recruited from the MS outpatient clinics in referral hospitals affiliated to Tehran University of Medical Sciences. In total, 226 female patients with MS were included after researchers clarified the aim of the study and received a signed declaration of informed consent. The inclusion criteria were diagnosis of MS according to the revised McDonald Criteria [16], being married, and having an Expanded Disability Status Scale (EDSS) score ≤8 [1]. Patients were excluded if they had preexisting major chronic illnesses or had no sexual experience. All patients underwent a full neurologic examination. Questionnaires This study made use of five questionnaires: (i) a study-specific questionnaire on demographic, clinical, and medical characteristics; (ii) the Female
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Reliability and Validity of the MSISQ-19 Sexual Function Index (FSFI); (iii) the Beck Depression Inventory (BDI-II); (iv) the EDSS; and (v) the MSISQ-19. The FSFI [17] consists of 19 items assessing the following dimensions: desire, arousal, lubrication, orgasm, satisfaction, and pain. The validity and reliability of the Iranian version of the FSFI have been confirmed [18]. The BDI-II [19,20] consists of 21 self-report items. Each item is rated on a 4-point Likert scale ranging from 0 to 3, thus giving a total score range of 0 to 63, with higher scores indicating more severe depression symptoms. The BDI-II has previously been validated for use among Iranians [21]. The EDSS is the gold standard for assessment of the severity of neurological impairment in people with MS. A neurologist scored the EDSS for the entire sample. EDSS scores range from 0 to 10; scores from 1.0 to 4.5 indicate that the patient is fully ambulatory without requiring any aid, while scores from 5.0 to 10 indicate increasingly severe impairment in walking [1]. The MSISQ self-report questionnaire contains 19 items. This scale rates how various MS symptoms have interfered with the patient’s sexual activity over the previous 6 months. It assesses three dimensions of sexual dysfunction: primary (five items), secondary (nine items), and tertiary (five items). Each item is rated on a five-point Likert scale (1, never; 2, almost never; 3, occasionally; 4, almost always; 5, always). The original validation study of the MSISQ-19 found it to demonstrate reliability, as well as construct, criterion, and concurrent validity, on measures of (i) marital satisfaction (specifically satisfaction with affective communication, satisfaction with problem-solving communication, and sexual satisfaction); (ii) MS-related neurological impairment and level of disability; (iii) psychological distress and well-being; and (iv) global sexual dysfunction [11]. A recent study revalidated it in a large sample (N = 6,000) of patients in the USA [22].
Statistical Analysis Descriptive statistical analysis was performed. Internal consistency was assessed using Cronbach’s alpha; values equal to or greater than 0.70 were considered satisfactory [23]. The factor structure of the MSISQ-19 was extracted by exploratory factor analysis (EFA). Concurrent validity of the MSISQ-19 was evaluated by assessing the convergent and divergent validity of scores on the MSISQ subscales
with regard to their correlations with scores on the FSFI, the EDSS, and the BDI-II. It was expected that scores on the three subscales of the MSISQ would be negatively correlated with scores on the FSFI. We hypothesized that overall disability (EDSS score) and depression (BDI-II score) would be correlated with all MSISQ-19 subscales but most strongly with secondary dysfunction and tertiary dysfunction, respectively. Correlations were calculated using Pearson’s product-moment correlation coefficient (r). SPSS statistical software (version 16.0; SPSS Inc., Chicago, IL, USA) was used for all analyses.
Ethics The ethics committee of Shahed University approved the study. We obtained written informed consent from participants after comprehensive explanation of the procedures. Results
In all, 226 women were studied. The mean age of participants was 35.77 years (SD = 8.07). The mean disease duration was 1.84 years (SD = 0.79). The detailed sample characteristics are shown in Table 1.
Table 1 Demographic characteristics of the sample (N = 226) Age, n (%) 18–30 30–45 45–65 Education level, n (%) Primary Secondary Higher Employment status, n (%) Housewife Employed Duration of marriage (years), n (%) >10 10–20 21–40 Disease duration (years), n (%) 0–8 ≥9 EDSS score, n (%) 0–4.5 5–8 EDSS score, mean (SD) MSISQ-19 score, mean (SD) BDI-II score, mean (SD) FSFI score, mean (SD)
62 (27.4) 141 (62.4) 23 (10.2) 19 (8.4) 138 (61.0) 69 (30.5) 189 (83.6) 37 (16.4) 96 (42.5) 81 (35.8) 49 (21.7) 169 (74.8) 57 (25.2) 165 (73) 61 (27) 2.99 (2.17) 46.15 (17.51) 17.86 (11.13) 25.21 (8.16)
EDSS = Expanded Disability Status Scale (score range 0–10); MSISQ19 = Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (score range 19–95); BDI-II = Beck Depression Inventory-II (score range 0–63); FSFI = Female Sexual Function Index (score range 2–36)
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Table 2 Results obtained from exploratory factor analysis Item
F1
F2
F3
1. Muscle tightness or spasms in my arms, 0.48 0.81 0.20 legs, or body 2. Bladder or urinary symptoms 0.36 0.78 0.36 3. Bowel symptoms 0.43 0.72 0.33 4. Feelings of dependency because of MS 0.34 0.76 0.38 5. Tremors or shaking in my hands or body 0.44 0.81 0.32 6. Pain, burning, or discomfort in my body 0.56 0.80 0.37 7. Feeling that my body is less attractive 0.58 0.59 0.50 8. Problems moving my body the way I want 0.56 0.70 0.36 during sexual activity 9. Feeling less masculine or feminine due to 0.78 0.47 0.40 MS 10. Problems with concentration, memory, or 0.71 0.57 0.39 thinking 11. Exacerbation or significant worsening of 0.76 0.56 0.41 my MS 12. Less feeling or numbness in my genitals 0.71 0.57 0.41 13. Fear of being rejected sexually because 0.27 0.21 0.78 of MS 14. Worries about sexually satisfying my 0.45 0.43 0.87 partner 15. Feeling less confident about my sexuality 0.50 0.45 0.87 due to MS 16. Lack of sexual interest or desire 0.81 0.31 0.39 17. Less intense or pleasurable orgasms or 0.89 0.39 0.38 climaxes 18. Takes too long to orgasm or climax 0.89 0.41 0.41 19. Inadequate vaginal wetness or lubrication 0.50 0.33 0.16 Eigenvalue 8.84 1.77 1.36 Variance explained (%) 46.5 9.31 7.20 Cumulative variance explained (%) 46.5 55.8 63.0 F1 = primary sexual dysfunction; F2 = secondary sexual dysfunction; F3 = tertiary sexual dysfunction
Construct Validity Analysis EFA was used to determine the underlying factor structure of the set of items. The calculated Kaiser–Meyer–Olkin statistic was 0.97, and Bartlett’s test of sphericity was significant (P < 0.001), indicating sampling adequacy for principal component analysis. EFA was thus performed using principal component analysis with oblique rota-
Table 3
tion. As in the original validation study, a threefactor solution emerged based on eigenvalues higher than 1 and loading level of 0.4 or above, supporting the primary, secondary, and tertiary dimensions. The three-factor solution explained 63.0% of the total variance for women with MS. The detailed results are shown in Table 2.
Reliability Analysis Cronbach’s alpha was 0.90 for the MSISQ-19 as a whole, with values of 0.85, 0.90, and 0.78 for primary, secondary, and tertiary sexual dysfunction, respectively. Concurrent Validity Analysis The results showed that there were correlations between the primary subscale and the secondary (r = 0.68) and tertiary (r = 0.67) subscales. In addition, the secondary and tertiary subscales were correlated (r = 0.67). As shown in Table 3, the results indicated that there were correlations between total MSISQ score and the primary (r = 0.85), secondary (r = 0.92), and tertiary subscales. The FSFI was developed to evaluate female sexual function, and only women participated in this study [17]. Similarly, the MSISQ-19 was used to assess sexual activity and satisfaction in persons with MS. It was hypothesized that FSFI score would be correlated with scores on the MSISQ-19 and its subscales. The relationships of FSFI score with scores on the MSISQ-19 and its subscales were examined using the Pearson productmoment correlation coefficient (r). The results indicated that there were negative associations between FSFI score and scores on the MSISQ-19 and its subscales. As shown in Table 3, the results indicated that the FSFI score correlated with the total MSISQ-19 score (r = −0.54 P = 0.01), the
Correlations of scores on MSISQ-19 and subscales with EDSS, BDI-II, and FSFI scores MSISQ-19 score
MSISQ-19 score Primary Secondary Tertiary Total EDSS score BDI-II score FSFI score
Primary
Secondary
Tertiary
Total
EDSS score
BDI-II score
FSFI score
1 0.68 0.67 0.85 0.35 0.48 −0.59
0.68 1 0.67 0.92 0.55 0.50 −0.48
0.67 0.67 1 0.85 0.33 0.50 −0.36
0.85 0.92 0.85 1 0.49 −0.53 −0.54
0.35 0.55 0.33 0.49 1 0.32 0.38
0.48 0.50 0.50 0.53 0.32 1 0.19
−0.59 −0.48 −0.36 −0.54 0.38 0.19 1
All correlations were significant at the P < 0.01 level MSISQ-19 = Multiple Sclerosis Intimacy and Sexuality Questionnaire-19; EDSS = Expanded Disability Status Scale; BDI-II = Beck Depression Inventory-II; FSFI = Female Sexual Function Index
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Reliability and Validity of the MSISQ-19 primary sexual dysfunction subscale score (r = −0.59, P = 0.01), the secondary sexual dysfunction subscale score (r = −0.48, P = 0.01), and the tertiary sexual dysfunction subscale score (r = −0.36, P = 0.01). The secondary sexual dysfunction subscale evaluates sexual problems secondary to bladder/ bowel dysfunction, nongenital sensory changes, muscle tightness or spasm, tremors, difficulty with mobility, and pain symptoms. Similarly, the EDSS score evaluates MS symptoms and MS disability. Thus, it was hypothesized that EDSS score would be associated with scores on the MSISQ-19 and its subscales, especially the secondary dysfunction scale. The results showed that there were significant associations between EDSS score and total MSISQ-19 score (r = 0.49, P = 0.01), the primary sexual dysfunction subscale score (r = 0.35, P = 0.01), the secondary sexual dysfunction subscale score (r = 0.55, P = 0.01), and the tertiary sexual dysfunction subscale score (r = 0.33, P = 0.01). As expected, EDSS score was more highly correlated with secondary dysfunction subscale score than with scores on the other subscales of the MSISQ-19. The detailed results are shown in Table 3. The MSISQ-19 tertiary sexual dysfunction subscale assesses disability-related psychological and emotional influences that interfere with sexual functioning. Therefore, it was expected that BDI-II score would be associated with scores on the MSISQ-19 and its subscales, especially the tertiary dysfunction subscale. The analysis showed that BDI-II score was associated with total MSISQ-19 score (r = 0.53, P = 0.01) and scores on the three subscales (primary, r = 0.48, P = 0.01; secondary, r = 0.50, P = 0.01; tertiary, r = 0.50, P = 0.01). This result showed that there was strong correlation between BDI-II score and tertiary sexual dysfunction. In addition, there was a similar correlation between secondary sexual dysfunction and BDI-II score. Discussion
MS can produce many symptoms that can interfere with sexual function and satisfaction. The MSISQ-19 was developed to determine perceived influence of MS symptoms on sexual activity and satisfaction and on the overall quality of intimate relationships [11]. As patients with MS in the Iranian population have a high prevalence of sexual dysfunction, yet there are few measures validated in this group, there is a need to culturally
2229 adapt and validate MS-specific sexuality assessments, such as the MSISQ-19, in Iran. The results showed that the Iranian version of the MSISQ-19 had satisfactory internal consistency, content validity, and factor structure for primary, secondary, and tertiary dysfunction. However, it should be noted that we changed a few wordings in the Persian version. For example, in item 2 and item 3 we used “problems” instead of “symptoms,” and in item 8 (“problems moving my body the way I want during sexual activity”) we changed “the way I want” to “to a desirable position.” The reliability of the MSISQ-19 was confirmed by Cronbach’s alpha, which showed high internal consistency for the full scale (α = 0.90) and for the primary (α = 0.85), secondary (α = 0.90), and tertiary (α = 0.78) subscales. The results of this study confirmed construct validity for primary, secondary, and tertiary sexual dysfunction, in line with the original validation study [11]. The FSFI was designed to addresses the multidimensional nature of female sexual function. Likewise, the MSISQ-19 was developed to assess the multidimensional nature of sexual problems in MS patients. Therefore, it was hypothesized that the FSFI score would be correlated with scores on the MSISQ-19 and its subscales. The results from the current study showed a negative association between FSFI score and scores on the MSISQ-19 and its subscales. As expected, the pattern of correlations between the two instruments supported the convergent validity of the MSISQ-19. In the original validation study, the Marital Satisfaction Inventory (MSI) [24], a self-report inventory designed to assess specific aspects of spousal interaction, was used to assess the convergent and divergent validity of the MSISQ-19. The MSI confirmed the convergent and divergent validity of the MSISQ-19 [11]. The results of this study demonstrated a positive correlation between sexual dysfunction and neurological impairment measured by EDSS in MS patients [7,25,26]. The EDSS is the gold standard for assessment of disability in people with MS. In fact, sexual dysfunction may result from MS-related physical changes that indirectly affect the sexual response, such as loss of coordination or tremor, bowel/bladder dysfunction, weakness or difficulty moving limbs, problems with speech, and numbness or loss of sensation, all of which are assessed by the EDSS [1]. Similarly to the EDSS, the secondary sexual dysfunction subscale of the MSISQ-19 evaluates MS symptoms that affect J Sex Med 2014;11:2225–2231
2230 sexual feeling indirectly. As expected, there was significant correlation between EDSS score and scores on the MSISQ-19 and its subscales, especially the secondary sexual dysfunction subscale. Therefore, it seems that the MSISQ-19 can be used to assess MS symptoms and to verify the influence of MS symptoms on sexual functioning [11]. Depressive disorders are more prevalent in MS than in other chronic neurological disorders [27]. Significant correlation has been reported between sexual dysfunction and depression [6,25]. It was expected that the BDI-II score would be correlated with scores on the MSISQ-19 and its subscales, especially the tertiary dysfunction subscale, because the tertiary sexual dysfunction items measure psychological aspects of sexual dysfunction [22]. In the original validation study, the Mental Health Inventory (MHI) was used as a proxy for measuring psychic distress. Correlations were found between MHI score and scores on the MSISQ-19 and its subscales. These results are consistent with the results from our study.
Limitations Our sample consisted of women with MS. Although the factor structure and correlations with other measures found in this study were highly similar to those found for the English version, it is not known whether the Persian version is sensitive to interventions to improve sexual function. It is also not known whether the Persian version is sensitive to changes in disease status over time. In addition, further studies are needed to establish psychometric properties for male MS patients in Iran. Conclusion
In general, the findings suggest that the Persian version of the MSISQ-19 is a reliable and valid measure of sexual function among Iranian women with MS. Acknowledgments
The authors gratefully acknowledge the Institutional Review Board of Shahed University, which approved and supported this project. They also wish to thank the participants for their cooperation. Corresponding Author: Parvin Rahnama, PhD, Department of Midwifery, Faculty of Nursing and Midwifery, Shahed University, Tehran, Iran. Tel: (081) 912-175-6442; Fax: (021) 664-18580; E-mail: [email protected] J Sex Med 2014;11:2225–2231
Mohammadi et al. Conflict of Interest: The authors report no conflicts of interest. Statement of Authorship
Category 1 (a) Conception and Design Khadijeh Mohammadi; Parvin Rahnama (b) Acquisition of Data Parvin Rahnama; Khadijeh Mohammadi (c) Analysis and Interpretation of Data Ali Montazeri; Frederick W. Foley
Category 2 (a) Drafting the Article Khadijeh Mohammadi; Parvin Rahnama (b) Revising It for Intellectual Content Ali Montazeri; Frederick W. Foley
Category 3 (a) Final Approval of the Completed Article Khadijeh Mohammadi; Parvin Rahnama; Ali Montazeri References 1 Kurtzke JF. Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology 1983;33:1444–52. 2 Patten S, Beck C, Williams J, Barbui C, Metz L. Major depression in multiple sclerosis: A population-based perspective. Neurology 2003;61:1524–7. 3 Elhami SR, Mohammad K, Sahraian MA, Efatekhar H. A 20 year incidence trend (1989–2008) and point prevalence (March 20, 2009) of multiple sclerosis in Tehran, Iran: A populationbased study. Neuroepidemiology 2011;36:141–7. 4 Bronner G, Elaran E, Golomb AD, Korczyn AD. Female sexuality in multiple sclerosis: The multidimensional nature of the problem and the intervention. Acta Neurol Scand 2010;121:289–301. 5 Safarinejad MR. Female sexual dysfunction in a populationbased study in Iran: Prevalence and associated risk factors. Int J Impot Res 2006;18:382–95. 6 Mohammadi K, Rahnama P, Moayed Mohseni S, Sahraian MA, Montazeri A. Determinants of sexual dysfunction in women with multiple sclerosis. BMC Neurol 2013;13:83. 7 Tepavcevic DK, Kostic J, Basoroski ID, Stojsavljevic N, Pekmezovic T, Drulovic J. The impact of sexual dysfunction on the quality of life measured by MSQoL-54 in patients with multiple sclerosis. Mult Scler 2008;14:1131–6. 8 Foley FW, Werner MA. How MS affects sexuality and intimacy. In: Kalb RC, ed. Multiple sclerosis: The questions you have, the answers you need. New York: Demos Medical Publishing; 2012:147–70. 9 Foley FW, Sanders A. Sexuality, multiple sclerosis, and women. MS Management 1997;4:1–10. 10 Foley FW, LaRocca NG, Sanders AS, Zemon V. Rehabilitation of intimacy and sexual dysfunction in couples with multiple sclerosis. Mult Scler 2001;7:417–21. 11 Sanders AS, Foley FW, LaRocca NG, Nicholas G, Zemon V. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19). Sex Disabil 2000;18:3–24.
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2231 19 Beck AT, Steer RA, Brown GK. Manual for the Beck Depression Inventory-II. San Antonio, TX: Psychological Corporation; 1996. 20 American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th edition. Washington, DC: American Psychiatric Association; 1994. 21 Mohammadkhani P, Dabson KS. Psychometric characteristics of Beck Depression Inventory-II in patients with major depressive disorder. J Rehabil 2007;29:80–6. 22 Foley FW, Zemon V, Campagnolo D, Marrie RA, Cutter G, Tyry T, Beier M, Farrell E, Vollmer T, Schairer L. The Multiple Sclerosis Intimacy and Sexuality Questionnaire—Revalidation and development of a 15-item version with a large US sample. Mult Scler 2013;19:1197–203. 23 Nunnally JC, Bernstein IR. Psychometric theory. 3rd edition. New York: McGraw-Hill; 1994. 24 Snyder DK. Marital Satisfaction Inventory manual. Los Angeles: Western Psychological Services; 1981. 25 Zivadinov R, Zorzon M, Bosco A, Bragadin LM, Moretti R, Bonfigli L, Iona LG, Cazzato G. Sexual dysfunction in multiple sclerosis: II. Correlation analysis. Mult Scler 1999;5:428–31. 26 Zivadinov R, Zorzon M, Locatelli L, Stival B, Monti F, Nasuelli D, Tommasi MA, Bratina A, Cazzato G. Sexual dysfunction in multiple sclerosis: A MRI, neurophysiological and urodynamic study. J Neurol Sci 2003;210:73–6. 27 Schubert DS, Foliart RH. Increased depression in multiple sclerosis patients: A meta-analysis. Psychosomatics 1993;34: 124–30.
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ORIGINAL RESEARCH—OUTCOMES ASSESSMENT The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19: Reliability, Validity, and Factor Structure of the Persian Version Khadijeh Mohammadi, MSc,* Parvin Rahnama, PhD,* Ali Montazeri, PhD,† and Frederick W. Foley, PhD‡ *Department of Midwifery, Faculty of Nursing and Midwifery, Shahed University, Tehran, Iran; †Mental Health Research Group, Health Metrics Research Centre, Iranian Institute for Health Sciences Research, Academic Center for Education, Culture and Research, Tehran, Iran; ‡Ferkauf Graduate School of Psychology, Yeshiva University, New York, NY, USA DOI: 10.1111/jsm.12531
ABSTRACT
Introduction. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) was designed to assess the perceived influence of multiple sclerosis (MS) symptoms on sexual activity and satisfaction. Aims. This study aimed to translate and validate the MSISQ-19 in women with MS in Iran. Methods. The translation of the original questionnaire was carried out in accordance with a standard forward– backward procedure. Then, a sample of 226 married women with MS completed the questionnaire. Reliability was estimated using Cronbach’s alpha coefficient. Concurrent validity was assessed by comparison with the Female Sexual Function Index (FSFI), the Expanded Disability Status Scale (EDSS), and the Beck Depression Inventory-II (BDI-II). The factor structure of the questionnaire was extracted by performing exploratory factor analyses. All patients underwent a full neurologic examination. Main Outcome Measures. MSISQ-19 score was the main outcome measure. Results. The mean age of participants was 35.77 years (SD = 8.07), with mean disease duration of 1.84 years (SD = 0.79). Cronbach’s alpha coefficient was 0.90 for total MSISQ-19 score, with values of 0.85, 0.90, and 0.78 for the subscales assessing primary, secondary, and tertiary sexual dysfunction, respectively. The principal component analysis indicated a three-factor solution, similar to that found in the original validation study, that explained 63.0% of the total variance for women with MS. Scores on the MSISQ-19 and its subscales correlated with scores on the FSFI, EDSS, and BDI-II (all P < 0.01). Conclusion. In general, the findings suggest that the MSISQ-19 is a reliable and valid measure of sexual function among Iranian women with MS. However, further studies are needed to establish psychometric properties for male MS patients in Iran. Mohammadi K, Rahnama P, Montazer A, and Foley FW. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19: Reliability, validity, and factor structure of the Persian version. J Sex Med 2014;11:2225–2231. Key Words. Multiple Sclerosis; Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19); Reliability; Validity; Neurological Disease; Sexual Function
Introduction
C
hronic neurological diseases such as multiple sclerosis (MS) are associated with significant physical disability [1] and psychiatric illness [2]. The incidence of MS has increased over the last 20 years in the Iranian population, and it is more prevalent in women than men in this community [3]. The prevalence of sexual dysfunction in MS © 2014 International Society for Sexual Medicine
patients has been shown to be very high, the rate varying between 40% and 70% [4]. The results of previous studies indicate that the prevalence of sexual dysfunction is higher in Iranian women with MS than in the general female population (55.3% vs. 31%) [5,6]. The etiology of sexual dysfunction in MS patients is multidimensional in nature and has multiple causal pathways [7]. The aspects of sexual J Sex Med 2014;11:2225–2231
2226 dysfunction in individuals with MS have been conceptualized in terms of primary, secondary, and tertiary sexual dysfunction [8,9]. Primary sexual dysfunction occurs as a result of MS-related neurologic changes in the central nervous system that directly impair sexual feelings or performance. It is characterized by symptoms including lack of sexual interest/desire, unpleasant genital sensations or genital numbness, problems with arousal and orgasm, inadequate vaginal lubrication, and difficulty getting or keeping a satisfactory erection. Secondary sexual dysfunction is a result of MS-related physical symptoms that do not involve the neural pathways of the genital system but affect sexual feelings indirectly; these may include fatigue, muscle weakness, spasticity, difficulty with mobility, body or hand tremors, lack of coordination, bladder and bowel dysfunction, side effects from MS medications, numbness, pain, burning, and cognitive difficulties. Tertiary sexual dysfunction results from disability-related psychological, emotional, social, and cultural issues that can affect sexual feelings. Internalized beliefs about adhering to gender role expectations in MS patients may trigger tertiary sexual symptoms including negative changes in self-image, mood, or body image; depression and anger; feeling less “sexy” or attractive; feeling less masculine or feminine; feeling less confident about one’s sexuality; fear of being rejected sexually; worries about sexually satisfying one’s partner; and difficulty communicating with one’s partner [4,10,11]. For health-care providers, obtaining information related to sexual concerns may be difficult due to reluctance to talk about sexuality on the part of both patients and providers [5]. Despite the fact that patients may desire their physician to initiate discussion about sexual concerns [12], physicians have traditionally viewed this as taboo and may avoid dealing with this issue [13]. In order to provide sexual counseling to those who may benefit, designing reliable, valid, sensitive, and specific screening measures to evaluate sexual problems is a necessary first step. In the case of a complex disabling disease, developing a questionnaire that assesses the relevant dimensions impacted by the disease is important for assessing sexual functioning [14]. One MS-specific scale has been developed to evaluate the perceived impact of MS symptoms on sexual health from a multidimensional perspective [11]. It is referred to as the Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19). To the best of our knowledge, there J Sex Med 2014;11:2225–2231
Mohammadi et al. has previously been no instrument for assessing sexual dysfunction in MS patients who speak Persian. The aims of the study included (i) translation of the English version of the MSISQ-19 into Persian using standard back-translation techniques and (ii) evaluation of the reliability, construct validity, and concurrent validity of the Persian version of the MSISQ-19 in a sample of women diagnosed with MS in Iran. It was expected that Iranian health-care practitioners would be better able to create a suitable opportunity for sexual communication with their patients with MS using a Persian scale validated in Iran. Methods
Translation First, two independent translators translated the original scale into Persian. The translators and one of the authors compared the two translations and established a single provisional version. Second, the provisional version was translated into English by two other professional translators [15]. Finally, an expert committee consisting of the translators, the researchers, two sexologists, and a neurologist reviewed all the translations. The final backtranslated English version was evaluated based on semantic, idiomatic, experiential, and conceptual equivalence, and a final Persian version of the MSISQ was produced. To ensure face validity, the final Persian version was given to 10 patients who completed it and confirmed their understanding of the items. Design and Procedure Participants were recruited from the MS outpatient clinics in referral hospitals affiliated to Tehran University of Medical Sciences. In total, 226 female patients with MS were included after researchers clarified the aim of the study and received a signed declaration of informed consent. The inclusion criteria were diagnosis of MS according to the revised McDonald Criteria [16], being married, and having an Expanded Disability Status Scale (EDSS) score ≤8 [1]. Patients were excluded if they had preexisting major chronic illnesses or had no sexual experience. All patients underwent a full neurologic examination. Questionnaires This study made use of five questionnaires: (i) a study-specific questionnaire on demographic, clinical, and medical characteristics; (ii) the Female
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Reliability and Validity of the MSISQ-19 Sexual Function Index (FSFI); (iii) the Beck Depression Inventory (BDI-II); (iv) the EDSS; and (v) the MSISQ-19. The FSFI [17] consists of 19 items assessing the following dimensions: desire, arousal, lubrication, orgasm, satisfaction, and pain. The validity and reliability of the Iranian version of the FSFI have been confirmed [18]. The BDI-II [19,20] consists of 21 self-report items. Each item is rated on a 4-point Likert scale ranging from 0 to 3, thus giving a total score range of 0 to 63, with higher scores indicating more severe depression symptoms. The BDI-II has previously been validated for use among Iranians [21]. The EDSS is the gold standard for assessment of the severity of neurological impairment in people with MS. A neurologist scored the EDSS for the entire sample. EDSS scores range from 0 to 10; scores from 1.0 to 4.5 indicate that the patient is fully ambulatory without requiring any aid, while scores from 5.0 to 10 indicate increasingly severe impairment in walking [1]. The MSISQ self-report questionnaire contains 19 items. This scale rates how various MS symptoms have interfered with the patient’s sexual activity over the previous 6 months. It assesses three dimensions of sexual dysfunction: primary (five items), secondary (nine items), and tertiary (five items). Each item is rated on a five-point Likert scale (1, never; 2, almost never; 3, occasionally; 4, almost always; 5, always). The original validation study of the MSISQ-19 found it to demonstrate reliability, as well as construct, criterion, and concurrent validity, on measures of (i) marital satisfaction (specifically satisfaction with affective communication, satisfaction with problem-solving communication, and sexual satisfaction); (ii) MS-related neurological impairment and level of disability; (iii) psychological distress and well-being; and (iv) global sexual dysfunction [11]. A recent study revalidated it in a large sample (N = 6,000) of patients in the USA [22].
Statistical Analysis Descriptive statistical analysis was performed. Internal consistency was assessed using Cronbach’s alpha; values equal to or greater than 0.70 were considered satisfactory [23]. The factor structure of the MSISQ-19 was extracted by exploratory factor analysis (EFA). Concurrent validity of the MSISQ-19 was evaluated by assessing the convergent and divergent validity of scores on the MSISQ subscales
with regard to their correlations with scores on the FSFI, the EDSS, and the BDI-II. It was expected that scores on the three subscales of the MSISQ would be negatively correlated with scores on the FSFI. We hypothesized that overall disability (EDSS score) and depression (BDI-II score) would be correlated with all MSISQ-19 subscales but most strongly with secondary dysfunction and tertiary dysfunction, respectively. Correlations were calculated using Pearson’s product-moment correlation coefficient (r). SPSS statistical software (version 16.0; SPSS Inc., Chicago, IL, USA) was used for all analyses.
Ethics The ethics committee of Shahed University approved the study. We obtained written informed consent from participants after comprehensive explanation of the procedures. Results
In all, 226 women were studied. The mean age of participants was 35.77 years (SD = 8.07). The mean disease duration was 1.84 years (SD = 0.79). The detailed sample characteristics are shown in Table 1.
Table 1 Demographic characteristics of the sample (N = 226) Age, n (%) 18–30 30–45 45–65 Education level, n (%) Primary Secondary Higher Employment status, n (%) Housewife Employed Duration of marriage (years), n (%) >10 10–20 21–40 Disease duration (years), n (%) 0–8 ≥9 EDSS score, n (%) 0–4.5 5–8 EDSS score, mean (SD) MSISQ-19 score, mean (SD) BDI-II score, mean (SD) FSFI score, mean (SD)
62 (27.4) 141 (62.4) 23 (10.2) 19 (8.4) 138 (61.0) 69 (30.5) 189 (83.6) 37 (16.4) 96 (42.5) 81 (35.8) 49 (21.7) 169 (74.8) 57 (25.2) 165 (73) 61 (27) 2.99 (2.17) 46.15 (17.51) 17.86 (11.13) 25.21 (8.16)
EDSS = Expanded Disability Status Scale (score range 0–10); MSISQ19 = Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (score range 19–95); BDI-II = Beck Depression Inventory-II (score range 0–63); FSFI = Female Sexual Function Index (score range 2–36)
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Table 2 Results obtained from exploratory factor analysis Item
F1
F2
F3
1. Muscle tightness or spasms in my arms, 0.48 0.81 0.20 legs, or body 2. Bladder or urinary symptoms 0.36 0.78 0.36 3. Bowel symptoms 0.43 0.72 0.33 4. Feelings of dependency because of MS 0.34 0.76 0.38 5. Tremors or shaking in my hands or body 0.44 0.81 0.32 6. Pain, burning, or discomfort in my body 0.56 0.80 0.37 7. Feeling that my body is less attractive 0.58 0.59 0.50 8. Problems moving my body the way I want 0.56 0.70 0.36 during sexual activity 9. Feeling less masculine or feminine due to 0.78 0.47 0.40 MS 10. Problems with concentration, memory, or 0.71 0.57 0.39 thinking 11. Exacerbation or significant worsening of 0.76 0.56 0.41 my MS 12. Less feeling or numbness in my genitals 0.71 0.57 0.41 13. Fear of being rejected sexually because 0.27 0.21 0.78 of MS 14. Worries about sexually satisfying my 0.45 0.43 0.87 partner 15. Feeling less confident about my sexuality 0.50 0.45 0.87 due to MS 16. Lack of sexual interest or desire 0.81 0.31 0.39 17. Less intense or pleasurable orgasms or 0.89 0.39 0.38 climaxes 18. Takes too long to orgasm or climax 0.89 0.41 0.41 19. Inadequate vaginal wetness or lubrication 0.50 0.33 0.16 Eigenvalue 8.84 1.77 1.36 Variance explained (%) 46.5 9.31 7.20 Cumulative variance explained (%) 46.5 55.8 63.0 F1 = primary sexual dysfunction; F2 = secondary sexual dysfunction; F3 = tertiary sexual dysfunction
Construct Validity Analysis EFA was used to determine the underlying factor structure of the set of items. The calculated Kaiser–Meyer–Olkin statistic was 0.97, and Bartlett’s test of sphericity was significant (P < 0.001), indicating sampling adequacy for principal component analysis. EFA was thus performed using principal component analysis with oblique rota-
Table 3
tion. As in the original validation study, a threefactor solution emerged based on eigenvalues higher than 1 and loading level of 0.4 or above, supporting the primary, secondary, and tertiary dimensions. The three-factor solution explained 63.0% of the total variance for women with MS. The detailed results are shown in Table 2.
Reliability Analysis Cronbach’s alpha was 0.90 for the MSISQ-19 as a whole, with values of 0.85, 0.90, and 0.78 for primary, secondary, and tertiary sexual dysfunction, respectively. Concurrent Validity Analysis The results showed that there were correlations between the primary subscale and the secondary (r = 0.68) and tertiary (r = 0.67) subscales. In addition, the secondary and tertiary subscales were correlated (r = 0.67). As shown in Table 3, the results indicated that there were correlations between total MSISQ score and the primary (r = 0.85), secondary (r = 0.92), and tertiary subscales. The FSFI was developed to evaluate female sexual function, and only women participated in this study [17]. Similarly, the MSISQ-19 was used to assess sexual activity and satisfaction in persons with MS. It was hypothesized that FSFI score would be correlated with scores on the MSISQ-19 and its subscales. The relationships of FSFI score with scores on the MSISQ-19 and its subscales were examined using the Pearson productmoment correlation coefficient (r). The results indicated that there were negative associations between FSFI score and scores on the MSISQ-19 and its subscales. As shown in Table 3, the results indicated that the FSFI score correlated with the total MSISQ-19 score (r = −0.54 P = 0.01), the
Correlations of scores on MSISQ-19 and subscales with EDSS, BDI-II, and FSFI scores MSISQ-19 score
MSISQ-19 score Primary Secondary Tertiary Total EDSS score BDI-II score FSFI score
Primary
Secondary
Tertiary
Total
EDSS score
BDI-II score
FSFI score
1 0.68 0.67 0.85 0.35 0.48 −0.59
0.68 1 0.67 0.92 0.55 0.50 −0.48
0.67 0.67 1 0.85 0.33 0.50 −0.36
0.85 0.92 0.85 1 0.49 −0.53 −0.54
0.35 0.55 0.33 0.49 1 0.32 0.38
0.48 0.50 0.50 0.53 0.32 1 0.19
−0.59 −0.48 −0.36 −0.54 0.38 0.19 1
All correlations were significant at the P < 0.01 level MSISQ-19 = Multiple Sclerosis Intimacy and Sexuality Questionnaire-19; EDSS = Expanded Disability Status Scale; BDI-II = Beck Depression Inventory-II; FSFI = Female Sexual Function Index
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Reliability and Validity of the MSISQ-19 primary sexual dysfunction subscale score (r = −0.59, P = 0.01), the secondary sexual dysfunction subscale score (r = −0.48, P = 0.01), and the tertiary sexual dysfunction subscale score (r = −0.36, P = 0.01). The secondary sexual dysfunction subscale evaluates sexual problems secondary to bladder/ bowel dysfunction, nongenital sensory changes, muscle tightness or spasm, tremors, difficulty with mobility, and pain symptoms. Similarly, the EDSS score evaluates MS symptoms and MS disability. Thus, it was hypothesized that EDSS score would be associated with scores on the MSISQ-19 and its subscales, especially the secondary dysfunction scale. The results showed that there were significant associations between EDSS score and total MSISQ-19 score (r = 0.49, P = 0.01), the primary sexual dysfunction subscale score (r = 0.35, P = 0.01), the secondary sexual dysfunction subscale score (r = 0.55, P = 0.01), and the tertiary sexual dysfunction subscale score (r = 0.33, P = 0.01). As expected, EDSS score was more highly correlated with secondary dysfunction subscale score than with scores on the other subscales of the MSISQ-19. The detailed results are shown in Table 3. The MSISQ-19 tertiary sexual dysfunction subscale assesses disability-related psychological and emotional influences that interfere with sexual functioning. Therefore, it was expected that BDI-II score would be associated with scores on the MSISQ-19 and its subscales, especially the tertiary dysfunction subscale. The analysis showed that BDI-II score was associated with total MSISQ-19 score (r = 0.53, P = 0.01) and scores on the three subscales (primary, r = 0.48, P = 0.01; secondary, r = 0.50, P = 0.01; tertiary, r = 0.50, P = 0.01). This result showed that there was strong correlation between BDI-II score and tertiary sexual dysfunction. In addition, there was a similar correlation between secondary sexual dysfunction and BDI-II score. Discussion
MS can produce many symptoms that can interfere with sexual function and satisfaction. The MSISQ-19 was developed to determine perceived influence of MS symptoms on sexual activity and satisfaction and on the overall quality of intimate relationships [11]. As patients with MS in the Iranian population have a high prevalence of sexual dysfunction, yet there are few measures validated in this group, there is a need to culturally
2229 adapt and validate MS-specific sexuality assessments, such as the MSISQ-19, in Iran. The results showed that the Iranian version of the MSISQ-19 had satisfactory internal consistency, content validity, and factor structure for primary, secondary, and tertiary dysfunction. However, it should be noted that we changed a few wordings in the Persian version. For example, in item 2 and item 3 we used “problems” instead of “symptoms,” and in item 8 (“problems moving my body the way I want during sexual activity”) we changed “the way I want” to “to a desirable position.” The reliability of the MSISQ-19 was confirmed by Cronbach’s alpha, which showed high internal consistency for the full scale (α = 0.90) and for the primary (α = 0.85), secondary (α = 0.90), and tertiary (α = 0.78) subscales. The results of this study confirmed construct validity for primary, secondary, and tertiary sexual dysfunction, in line with the original validation study [11]. The FSFI was designed to addresses the multidimensional nature of female sexual function. Likewise, the MSISQ-19 was developed to assess the multidimensional nature of sexual problems in MS patients. Therefore, it was hypothesized that the FSFI score would be correlated with scores on the MSISQ-19 and its subscales. The results from the current study showed a negative association between FSFI score and scores on the MSISQ-19 and its subscales. As expected, the pattern of correlations between the two instruments supported the convergent validity of the MSISQ-19. In the original validation study, the Marital Satisfaction Inventory (MSI) [24], a self-report inventory designed to assess specific aspects of spousal interaction, was used to assess the convergent and divergent validity of the MSISQ-19. The MSI confirmed the convergent and divergent validity of the MSISQ-19 [11]. The results of this study demonstrated a positive correlation between sexual dysfunction and neurological impairment measured by EDSS in MS patients [7,25,26]. The EDSS is the gold standard for assessment of disability in people with MS. In fact, sexual dysfunction may result from MS-related physical changes that indirectly affect the sexual response, such as loss of coordination or tremor, bowel/bladder dysfunction, weakness or difficulty moving limbs, problems with speech, and numbness or loss of sensation, all of which are assessed by the EDSS [1]. Similarly to the EDSS, the secondary sexual dysfunction subscale of the MSISQ-19 evaluates MS symptoms that affect J Sex Med 2014;11:2225–2231
2230 sexual feeling indirectly. As expected, there was significant correlation between EDSS score and scores on the MSISQ-19 and its subscales, especially the secondary sexual dysfunction subscale. Therefore, it seems that the MSISQ-19 can be used to assess MS symptoms and to verify the influence of MS symptoms on sexual functioning [11]. Depressive disorders are more prevalent in MS than in other chronic neurological disorders [27]. Significant correlation has been reported between sexual dysfunction and depression [6,25]. It was expected that the BDI-II score would be correlated with scores on the MSISQ-19 and its subscales, especially the tertiary dysfunction subscale, because the tertiary sexual dysfunction items measure psychological aspects of sexual dysfunction [22]. In the original validation study, the Mental Health Inventory (MHI) was used as a proxy for measuring psychic distress. Correlations were found between MHI score and scores on the MSISQ-19 and its subscales. These results are consistent with the results from our study.
Limitations Our sample consisted of women with MS. Although the factor structure and correlations with other measures found in this study were highly similar to those found for the English version, it is not known whether the Persian version is sensitive to interventions to improve sexual function. It is also not known whether the Persian version is sensitive to changes in disease status over time. In addition, further studies are needed to establish psychometric properties for male MS patients in Iran. Conclusion
In general, the findings suggest that the Persian version of the MSISQ-19 is a reliable and valid measure of sexual function among Iranian women with MS. Acknowledgments
The authors gratefully acknowledge the Institutional Review Board of Shahed University, which approved and supported this project. They also wish to thank the participants for their cooperation. Corresponding Author: Parvin Rahnama, PhD, Department of Midwifery, Faculty of Nursing and Midwifery, Shahed University, Tehran, Iran. Tel: (081) 912-175-6442; Fax: (021) 664-18580; E-mail: [email protected] J Sex Med 2014;11:2225–2231
Mohammadi et al. Conflict of Interest: The authors report no conflicts of interest. Statement of Authorship
Category 1 (a) Conception and Design Khadijeh Mohammadi; Parvin Rahnama (b) Acquisition of Data Parvin Rahnama; Khadijeh Mohammadi (c) Analysis and Interpretation of Data Ali Montazeri; Frederick W. Foley
Category 2 (a) Drafting the Article Khadijeh Mohammadi; Parvin Rahnama (b) Revising It for Intellectual Content Ali Montazeri; Frederick W. Foley
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