MS and working life difficulties

MS and working life difficulties



Explore how MS nurses can help patients in adressing work life difficulties in an article by:

  • A. Rana Dogan, RN, MscN. Goztepe State Hospital, Neurology Clinic, Istanbul, Türkiye
  • Z. Tulek, RN, PhD, Associate Professor. Istanbul University-Cerrahpasa, Florence Nightingale Faculty of Nursing, Istanbul, Türkiye. 

Multiple sclerosis (MS) can cause a variety of symptoms, including motor, somatosensory, balance, coordination, visual, cognitive, and psychiatric disturbances. These symptoms can vary from patient to patient and even in the same patient over time. Over time, these symptoms not only affect patients physically, but also cause significant problems in patients' family life, social relationships, and work life (Julian et al., 2008). In addition, the fact that the disease often occurs before patients enter the workforce may prevent them from finding employment. In a qualitative study, patients reported that they had difficulty finding a job and, in some cases, had to hide their MS diagnosis in order to find a job (Toy & Tulek, 2016). Patients who have started their working lives may have difficulty staying in the workforce.

Studies reported that 47.5% of people with MS do not have a job, 32% change the type of their job after diagnosis, and 12.9% have to quit their job due to MS (Smith et al., 2005; Ozdemir and Aşiret, 2011; Kahraman et al., 2019). In one study, it was reported that only 35.8% of MS patients (40.9% of those under 65) were employed (Kobelt et al., 2006). All these figures show that there are serious problems in working life in patients with MS.

There are many factors that affect MS patients' stay in work. People with MS experience difficulties in working life depending on factors such as age, duration of diagnosis, MS type (PPMS), EDSS level, mobility problems, fatigue level (physical and cognitive), cognitive and neuropsychological disorders (depression, etc.). As the EDSS level deteriorates, patients' difficulties in working life increase. The working life of patients whose cognitive function (attention, concentration, visuospatial function, etc.) is impaired is also severely affected. In addition, sleep problems, the stress caused by the nature of work, and the fear of not being able to work due to the disease lead to an increase in anxiety and depression in those affected (Raggi, 2015, Dogan & Tulek, 2023). There are also people who are afraid of losing their jobs ( MS). In one study, a patient with MS, who works in the private sector, stated that he was afraid of being fired, so he even avoided getting permission to go to the outpatient clinic (Toy, Z., 2016). All these factors have a negative impact on patients' work life and work productivity; they cause people with MS to change jobs, quit their jobs, or be fired (Raggi, 2015, Dogan & Tulek, 2023). There are also MS patients who have difficulties in working life due to the disease, but have to continue working due to their financial obligations. Since there is a lack of vocational rehabilitation in many countries, these patients cannot be placed in suitable employment. Most MS patients may be unemployed (Kobelt et al., 2006; Ozdemir and Asiret, 2011). Patient withdrawal from the workforce negatively impacts them by causing financial difficulties (especially in countries where support for people with disabilities is inadequate) as well as preventing patient participation in society and leading to social isolation (Hadjimichael et al., 2007).

Considering that active participation in society (including working life) and realization of potential is a fundamental human right, patients should be supported to remain in working life as long as possible (Silvaggi et al., 2020). It is necessary to maintain the employment of people with MS (and other chronic diseases), to adapt their working conditions to the course of the disease, and to support the retention of patients in working life. For this reason, the problems faced by working MS patients during the clinical course of the disease should be assessed. Patients should be assessed for their working conditions and symptoms that may affect their work performance (cognitive impairment, fatigue, anxiety, and depression, etc.), and appropriate recommendations should be made for these conditions. If the nurse has official authorization in the country where she or he is located and the patient gives consent, it may be useful to discuss with the employer the design of working conditions according to the patient's needs.

In conclusion, many factors related to the disease affect people's working life and work efficiency at MS. These are important problems for patients. Considering the difficulties in patients' working life, we, MS nurses, have the responsibility to improve this process. 

What can we do as MS nurses to reduce the difficulties in the working lives of MS patients?

  • The MS nurse should provide individualized support to patients.

  • All components of their health status should be assessed so that patients can adapt to the new living arrangement as quickly as possible, especially during the stages when the disability is progressing.

  • Invisible symptoms such as fatigue and cognitive impairment that directly affect patients' work life and quality of life should also be considered. Suggestions should be made on how to control them.

  • To reduce the level of anxiety and depression, patients should be assisted with disease management and social support.

  • If necessary (if allowed by the legislation of the country), the patient's employer should be contacted and the patient should be assisted to work in conditions appropriate to his or her functional status.

  • Nurses should educate the patient about legal rights at work.

  • Vocational rehabilitation programs should be provided.

  • As a prerequisite for the role of patient advocate, nurses should actively participate in the regulation of social policies at the national and international levels.

Sources | Further reading

  • Basci D, Tulek Z. Assessment of cognitive function and its predictors in patients with multiple sclerosis: a case-control study. Neurol Sci. 2023 Mar;44(3):1009-1016. doi: 10.1007/s10072-022-06524-8.
  • Dogan, A.R.. (2023). Multipl Sklerozlu Hastalarda Çalışma Yaşamı Güçlükleri ve İlişkili Faktörler (Work Life Difficulties and Associated Factors in Patients with Multiple Sclerosis). Istanbul Unıversity-Cerrahpasa Institute of Graduate Studies, Master Thesis, Istanbul. (Advisor: Z Tulek).
  • Glanz, B.I., Degano, I.R., Rintell, J.D., Chitnis, T., Weiner, H.L., Healy, B.C. 2012. Work productivity in relapsing multiple sclerosis: associations with disability, depression, fatigue, anxiety, cognition, and health-related quality of life.Value Health.2012 Dec;15(8):1029-35.doi: 10.1016/j.jval.2012.07.010. 
  • Hadjimichael, O., Kerns, R.D., Rizzo, M.A., Cutter, G., Vollmer, T. (2007). Persistent pain and uncomfortable sensations in persons with multiple sclerosis. Pain. 127(1–2):35–41. 
  • Julian, L. J., Vella, L., Vollmer, T., Hadjimichael, O., Mohr, D. C. (2008). Employment in multiple sclerosis. Journal of neurology, 255(9), 1354-1360. 
  • Kahraman T., Özdoğan A. T., Honan C. A., Ertekin Ö.  ve Özakbaş S. (2019). The multiple sclerosis work difficulties questionnaire: translation and cross-cultural adaptation to Turkish and assessment of validity and reliability. Journal of Disability and Rehabilitation, 21, 2556-2562.
  • Kobelt G, Berg J, Lindgren P, Jonsson B. Costs and quality of life in multiple sclerosis in Europe: method of assessment and analysis. Eur J Health Econ 2006;7:s 5–13. 
  • Ozdemir L., Aşiret G.D. (2011) A holistic at patients with multiple sclerosis: focusing on social life, household and employment issues. Turk J Phys Med. Rehab., 57:19-24.
  • Raggi, A., Covelli, V., Schiavolin, S., Scaratti, C., Leonardi, M., & Willems, M. (2015). Work-related problems in multiple sclerosis: a literature review on its associates and determinants. Disability and Rehabilitation, 38(10), 936–944.
  • Silvaggi, F., Eigenmann, M., Scaratti, C., Guastafierro, E., Toppo, C., Lindstrom, J., Leonardi, M. (2020). Employment and chronic diseases: Suggested actions for the implementation of inclusive policies for the participation of people with chronic diseases in the labour market. International Journal of Environmental Research and Public Health, 17(3), 820. 
  • Smith, M.M., Arnett, P.A. (2005). Factors related to employment status changes in individuals with multiple sclerosis. Mult Scler, 11:602–609. 
  • Toy, Z. (2016). Multipl Sklerozun Psikososyal Etkilerinin Değerlendirilmesi (Evaluation of Psychosocial Effects of Multiple Sclerosis). Halic University Institute of Health Sciences, Master Thesis, Istanbul. (Advisor: Z Tulek).
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