Quality of Life Research

, Volume 28, Issue 2, pp 389–397 | Cite as

Sex differences in predictors of illness intrusiveness in persons with multiple sclerosis

  • Lindsay O. NetoEmail author
  • Elizabeth S. Gromisch
  • Jessica Sloan
  • Tuula Tyry
  • Frederick W. Foley



Multiple sclerosis (MS) is a complex, chronic disease that can have debilitating effects on daily activities and well-being, compromising health-related quality of life. One underlying determinant of quality of life (QOL) is perceived illness intrusiveness, which examines the disruptiveness of the condition and/or its related treatment on engagement in interest and activities, in turn affecting psychological functioning. There is evidence that persons with MS (PwMS) have higher level of illness intrusiveness compared to those with other chronic conditions; however, limited research exists on differences by sex. This study aimed to explore these possible differences between men and women, hypothesizing that men with MS will have overall higher illness intrusiveness (lower QOL) when compared to women with MS.


A total of 922 PwMS were primarily recruited through the North American Research Committee on MS Registry. The participants completed a one-time anonymous online survey. Illness intrusiveness was measured using the Illness Intrusiveness Ratings Scale (IIRS) total score and three subscales. Independent t-tests determined differences in demographics, disease characteristics, and IIRS outcomes. Hierarchical regressions were then used to further assess whether sex was a significant predictor of illness intrusiveness.


Men exhibited greater overall, intimacy, and relationship and personal development-related perceived illness intrusiveness. However, sex was only a significant predictor of the Intimacy IIRS subscale after accounting for age, disability, and depression.


These findings highlight the intrusiveness of MS on intimacy and sexual functioning, particularly among men. Potential clinical implications and future directions are discussed.


Multiple sclerosis Illness intrusiveness Sex differences Quality of life 



The PDDS is provided for use by the NARCOMS Registry: NARCOMS is supported in part by the Consortium of Multiple Sclerosis Centers (CMSC) and the Foundation of the CMSC.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institution and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.


  1. 1.
    Noseworthy, J. H., Lucchinetti, C., Rodriguez, M., & Weinshenker, B. G. (2000). Multiple sclerosis. The New England Journal of Medicine, 343(13), 938–952. Scholar
  2. 2.
    Zwibel, H. L., & Smrtka, J. (2011). Improving quality of life in multiple sclerosis: An unmet need. American Journal of Managed Care, 17(Suppl 5 Improving), 139–145.Google Scholar
  3. 3.
    Trojano, M., Lucchese, G., Graziano, G., Taylor, B. V., Simpson, S. Jr., Lepore, V., et al. (2012). Geographical variations in sex ratio trends over time in multiple sclerosis. PLoS ONE, 7(10), e48078. Scholar
  4. 4.
    Green, G., & Todd, J. (2008). ‘Restricting choices and limiting independence’: Social and economic impact of multiple sclerosis upon households by level of disability. Chronic Illness, 4(3), 160–172. Scholar
  5. 5.
    Aymerich, M., Guillamon, I., & Jovell, A. J. (2009). Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe). Patient Preference and Adherence, 3, 311–321.Google Scholar
  6. 6.
    Brola, W., Sobolewski, P., Fudala, M., Flaga, S., Jantarski, K., Ryglewicz, D., et al. (2016). Self-reported quality of life in multiple sclerosis patients: Preliminary results based on the Polish MS Registry. Patient Preference and Adherence, 10, 1647–1656. Scholar
  7. 7.
    Rezapour, A., Almasian Kia, A., Goodarzi, S., Hasoumi, M., Motlagh, N., S., & Vahedi, S. (2017). The impact of disease characteristics on multiple sclerosis patients’ quality of life. Epidemiology and Health, 39, e2017008. Scholar
  8. 8.
    Benito-Leon, J., Mitchell, A. J., Rivera-Navarro, J., & Morales-Gonzalez, J. M. (2013). Impaired health-related quality of life predicts progression of disability in multiple sclerosis. European Journal of Neurology, 20(1), 79–86. Scholar
  9. 9.
    Patti, F. P. A. (2010). Quality of life in patients affected by multiple sclerosis: A systemic review. New York: Springer.Google Scholar
  10. 10.
    Amato, M. P., Ponziani, G., Rossi, F., Liedl, C. L., Stefanile, C., & Rossi, L. (2001). Quality of life in multiple sclerosis: The impact of depression, fatigue and disability. Multiple Sclerosis Journal, 7(5), 340–344. Scholar
  11. 11.
    Kalia, L. V., & O’Connor, P. W. (2005). Severity of chronic pain and its relationship to quality of life in multiple sclerosis. Multiple Sclerosis Journal, 11(3), 322–327. Scholar
  12. 12.
    Nortvedt, M. W., Riise, T., Myhr, K. M., Landtblom, A. M., Bakke, A., & Nyland, H. I. (2001). Reduced quality of life among multiple sclerosis patients with sexual disturbance and bladder dysfunction. Multiple Sclerosis Journal, 7(4), 231–235. Scholar
  13. 13.
    Baumstarck, K., Pelletier, J., Boucekine, M., Auquier, P., & MusiQo, L. s. g (2015). Predictors of quality of life in patients with relapsing-remitting multiple sclerosis: A 2-year longitudinal study. Revue Neurologique (Paris), 171(2), 173–180. Scholar
  14. 14.
    Fernandez, O., Baumstarck-Barrau, K., Simeoni, M. C., Auquier, P., & MusiQoL (2011). Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: Assessment using the MusiQoL and SF-36 questionnaires. Multiple Sclerosis Journal, 17(10), 1238–1249. Scholar
  15. 15.
    Miller, A., & Dishon, S. (2006). Health-related quality of life in multiple sclerosis: The impact of disability, gender and employment status. Quality of Life Research, 15(2), 259–271. Scholar
  16. 16.
    Bergamaschi, R. (2007). Prognostic factors in multiple sclerosis. International Review of Neurobiology, 79, 423–447. Scholar
  17. 17.
    Bove, R., McHenry, A., Hellwig, K., Houtchens, M., Razaz, N., Smyth, P., et al. (2016). Multiple sclerosis in men: Management considerations. Journal of Neurology, 263(7), 1263–1273. Scholar
  18. 18.
    Casetta, I., Riise, T., Wamme Nortvedt, M., Economou, N. T., De Gennaro, R., Fazio, P., et al. (2009). Gender differences in health-related quality of life in multiple sclerosis. Multiple Sclerosis Journal, 15(11), 1339–1346. Scholar
  19. 19.
    Costa, D. C., Marques Sa, M. J., & Calheiros, J. M. (2013). Social characteristics and quality of life of Portuguese multiple sclerosis patients. Neurology and Therapy, 2(1–2), 43–56. Scholar
  20. 20.
    Karakiewicz, B., Stala, C., Grochans, E., Rotter, I., Mroczek, B., Zaremba-Pechmann, L., et al. (2010). Assessment of the impact of some sociodemographic factors on the quality of life of patients with multiple sclerosis. Annales Academiae Medicae Stetinensis, 56(3), 107–112.Google Scholar
  21. 21.
    Lex, H., Weisenbach, S., Sloane, J., Syed, S., Rasky, E., & Freidl, W. (2018). Social-emotional aspects of quality of life in multiple sclerosis. Psychology, Health & Medicine, 23(4), 411–423. Scholar
  22. 22.
    Turpin, K. V., Carroll, L. J., Cassidy, J. D., & Hader, W. J. (2007). Deterioration in the health-related quality of life of persons with multiple sclerosis: The possible warning signs. Multiple Sclerosis Journal, 13(8), 1038–1045. Scholar
  23. 23.
    Pfennings, L., Cohen, L., Ader, H., Polman, C., Lankhorst, G., Smits, R., et al. (1999). Exploring differences between subgroups of multiple sclerosis patients in health-related quality of life. Journal of Neurology, 246(7), 587–591.Google Scholar
  24. 24.
    Shawaryn, M. A., Schiaffino, K. M., LaRocca, N. G., & Johnston, M. V. (2002). Determinants of health-related quality of life in multiple sderosis: The role of illness intrusiveness. Multiple Sclerosis Journal, 8(4), 310–318. Scholar
  25. 25.
    Devins, G. (2010). Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease. Journal of Psychosomatic Research, 68, 591–602.Google Scholar
  26. 26.
    Franche, R. L., Abbey, S., Irvine, J., Shnek, Z. M., Grace, S. L., Devins, G. M., et al. (2004). Sex differences in predictors of illness intrusiveness 1 year after a cardiac event. Journal of Psychosomatic Research, 56(1), 125–132. Scholar
  27. 27.
    Mullins, A. J., Gamwell, K. L., Sharkey, C. M., Bakula, D. M., Tackett, A. P., Suorsa, K. I., et al. (2017). Illness uncertainty and illness intrusiveness as predictors of depressive and anxious symptomology in college students with chronic illnesses. Journal of American College Health, 65(5), 352–360. Scholar
  28. 28.
    Devins, G., Seland, T., Klein, G., Edworthy, S., & Sary, M. (1993). Stability and determinants of psychosocial well-being in multiple sclerosis. Rehabilitation Psychology, 38(1), 11.Google Scholar
  29. 29.
    Snyder, S., Foley, F. W., Farrell, E., Beier, M., & Zemon, V. (2013). Psychological and physical predictors of illness intrusiveness in patients with multiple sclerosis. Journal of the Neurological Sciences, 332(1–2), 41–44. Scholar
  30. 30.
    Bouchard, V., Duquette, P., & Mayo, N. E. (2017). Path to illness intrusiveness: What symptoms affect the life of people living with multiple sclerosis? Archives of Physical Medicine and Rehabilitation, 98(7), 1357–1365. Scholar
  31. 31.
    Devins, G. M., Edworthy, S. M., Seland, T. P., Klein, G. M., Paul, L. C., & Mandin, H. (1993). Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. The Journal of Nervous and Mental Disease, 181(6), 377–381.Google Scholar
  32. 32.
    Honarmand, K., & Feinstein, A. (2009). Validation of the hospital anxiety and depression scale for use with multiple sclerosis patients. Multiple Sclerosis Journal, 15(12), 1518–1524. Scholar
  33. 33.
    Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.Google Scholar
  34. 34.
    Marrie, R. A., Zhang, L., Lix, L. M., Graff, L. A., Walker, J. R., Fisk, J. D., et al. (2018). The validity and reliability of screening measures for depression and anxiety disorders in multiple sclerosis. Multiple Sclerosis and Related Disorders, 20, 9–15. Scholar
  35. 35.
    Hohol, M. J., Orav, E. J., & Weiner, H. L. (1995). Disease steps in multiple sclerosis: A simple approach to evaluate disease progression. Neurology, 45(2), 251–255.Google Scholar
  36. 36.
    Hohol, M. J., Orav, E. J., & Weiner, H. L. (1999). Disease steps in multiple sclerosis: A longitudinal study comparing disease steps and EDSS to evaluate disease progression. Multiple Sclerosis Journal, 5(5), 349–354. Scholar
  37. 37.
    Marrie, R. A., & Goldman, M. (2007). Validity of performance scales for disability assessment in multiple sclerosis. Multiple Sclerosis Journal, 13(9), 1176–1182. Scholar
  38. 38.
    Learmonth, Y. C., Motl, R. W., Sandroff, B. M., Pula, J. H., & Cadavid, D. (2013). Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurology, 13, 37. Scholar
  39. 39.
    Devins, G. M. (2010). Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease. Journal of Psychosomatic Research, 68(6), 591–602. Scholar
  40. 40.
    Field, A. (2009). Discovering statistics using SPSS. Thousand Oaks: SAGE.Google Scholar
  41. 41.
    Calabro, R. S., De Luca, R., Conti-Nibali, V., Reitano, S., Leo, A., & Bramanti, P. (2014). Sexual dysfunction in male patients with multiple sclerosis: A need for counseling! International Journal of Neuroscience, 124(8), 547–557. Scholar
  42. 42.
    Celik, D. B., Poyraz, E. C., Bingol, A., Idiman, E., Ozakbas, S., & Kaya, D. (2013). Sexual dysfunction in multiple sclerosis: Gender differences. Journal of the Neurological Sciences, 324(1–2), 17–20. Scholar
  43. 43.
    Marck, C. H., Jelinek, P. L., Weiland, T. J., Hocking, J. S., De Livera, A. M., Taylor, K. L., et al. (2016). Sexual function in multiple sclerosis and associations with demographic, disease and lifestyle characteristics: An international cross-sectional study. BMC Neurology, 16(1), 210. Scholar
  44. 44.
    McCabe, M. P. (2002). Relationship functioning and sexuality among people with multiple sclerosis. The Journal of Sex Research, 39(4), 302–309. Scholar
  45. 45.
    Zorzon, M., Zivadinov, R., Bosco, A., Bragadin, L. M., Moretti, R., Bonfigli, L., et al. (1999). Sexual dysfunction in multiple sclerosis: A case-control study. I. Frequency and comparison of groups. Multiple Sclerosis Journal, 5(6), 418–427. Scholar
  46. 46.
    Foley, F. W., Zemon, V., Campagnolo, D., Marrie, R. A., Cutter, G., Tyry, T., et al. (2013). The multiple sclerosis intimacy and sexuality questionnaire: Re-validation and development of a 15-item version with a large US sample. Multiple Sclerosis Journal, 19(9), 1197–1203. Scholar
  47. 47.
    Schairer, L. C., Foley, F. W., Zemon, V., Tyry, T., Campagnolo, D., Marrie, R. A., et al. (2014). The impact of sexual dysfunction on health-related quality of life in people with multiple sclerosis. Multiple Sclerosis Journal, 20(5), 610–616. Scholar
  48. 48.
    Vitkova, M., Rosenberger, J., Krokavcova, M., Szilasiova, J., Gdovinova, Z., Groothoff, J. W., et al. (2014). Health-related quality of life in multiple sclerosis patients with bladder, bowel and sexual dysfunction. Disability and Rehabilitation, 36(12), 987–992. Scholar
  49. 49.
    Tepavcevic, D. K., Kostic, J., Basuroski, I. D., Stojsavljevic, N., Pekmezovic, T., & Drulovic, J. (2008). The impact of sexual dysfunction on the quality of life measured by MSQoL-54 in patients with multiple sclerosis. Multiple Sclerosis Journal, 14(8), 1131–1136. Scholar
  50. 50.
    Foley, F. (2011). Assessment and treatment of sexual dysfunction in multiple sclerosis. In B. Giesser (Ed.), Primer in multiple sclerosis. New York: Oxford University Press.Google Scholar
  51. 51.
    Griswold, G. A., Halper, F. F., LaRocca, J. N. G., Zemon, V. (2003). Multiple sclerosis and sexuality: A survey of MS health professionals’ comfort, training, and inquiry about sexual dysfunction. Internatonal Journal of MS Care, 5(2), 37–51.Google Scholar
  52. 52.
    Gromisch, E. S., Schairer, L. C., Pasternak, E., Kim, S. H., & Foley, F. W. (2016). Assessment and treatment of psychiatric distress, sexual dysfunction, sleep disturbances, and pain in multiple sclerosis: A survey of members of the consortium of multiple sclerosis centers. International Journal of MS Care, 18(6), 291–297. Scholar
  53. 53.
    Lew-Starowicz, M., & Rola, R. (2014). Sexual dysfunctions and sexual quality of life in men with multiple sclerosis. The Journal of Sexual Medicine, 11(5), 1294–1301. Scholar
  54. 54.
    Fragala, E., Privitera, S., Giardina, R., Di Rosa, A., Russo, G. I., Favilla, V., et al. (2014). Determinants of sexual impairment in multiple sclerosis in male and female patients with lower urinary tract dysfunction: Results from an Italian cross-sectional study. The Journal of Sexual Medicine, 11(10), 2406–2413. Scholar
  55. 55.
    Culpepper, W. J., Wallin, M. T., Magder, L. S., Perencevich, E., Royal, W., Bradham, D. D., et al. (2015). VHA multiple sclerosis surveillance registry and its similarities to other contemporary multiple sclerosis cohorts. Journal of Rehabilitation Research & Development (JRRD), 52(3), 263–272. Scholar
  56. 56.
    Fox, R. J., Bacon, T. E., Chamot, E., Salter, A. R., Cutter, G. R., Kalina, J. T., et al. (2015). Prevalence of multiple sclerosis symptoms across lifespan: Data from the NARCOMS Registry. Neurodegenerative Disease Management, 5(6 Suppl), 3–10. Scholar

Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  1. 1.Mandell Center for Multiple SclerosisMount Sinai Rehabilitation Hospital, Trinity Health of New EnglandHartfordUSA
  2. 2.Rocky Mountain Regional Veterans Affairs Medical CenterSt. AuroraUSA
  3. 3.Dignity HealthSt. Joseph’s Hospital and Medical CenterPhoenixUSA
  4. 4.Ferkauf Graduate School of PsychologyYeshiva UniversityBronxUSA
  5. 5.Holy Name Medical Center Multiple Sclerosis CenterTeaneckUSA

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