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MS research update - The effect of fatigue on ability to work and on quality of life - 20 March 2013

Summary

This research looked at the capacity to work, either full or part time, in a group of people with MS in Sweden. It found that fatigue and heat sensitivity played a major part in limiting the ability to work. Those with a higher level of education were more likely to stay in employment possibly because they were more likely to have a desk-based, rather than a physical, job. Being able to work was strongly linked to a better quality of life.

Background

Work plays a very important part in many people's lives. For people with MS, some symptoms may affect the ability to work more than others. Fatigue is a very common symptom in MS which affects many aspects of everyday life.

This study looked at the capacity to work and the health related quality of life of people with MS and assessed the influence of fatigue, sensitivity to heat, cognitive symptoms, level of disability and anxiety or emotional distress.

How this study was carried out

257 people with a definite diagnosis of MS living in eastern Sweden completed a questionnaire. Three quarters (76%) were women and all were of working age (between 20 and 65) although the average age was 48. All the participants had an EDSS (Expanded Disability Status Score) of 6.5 or less meaning that the maximum level of disability was needing two walking aids (such as walking sticks) to walk 20m without resting.

Information was collected from each person on their age, disease course, level of education and family circumstances. In addition, whether they worked full time or part time or were not working and whether they were on full or part time sick leave or received a disability pension. People were also asked whether heat made their symptoms worse.

Other symptoms and aspects of their lives were assessed using a series of questionnaires:

  • Health related quality of life using the SF-36 Health Survey
  • The level of fatigue using the Fatigue Severity Scale (FSS)
  • Problems with memory, attention and concentration using the Perceived Deficit Questionnaire (PDQ)
  • Anxiety and emotional distress using the Hospital Anxiety Depression (HAD) scale

What was found

Six out of ten (60%) participants reported working full or part time and they were more likely to be younger (average age of 45), have a lower level of disability and to experience less fatigue, heat sensitivity, cognitive symptoms and anxiety/emotional distress.

Three quarters (75%) of participants with a university education were working compared with just over half (52%) of those with a secondary school education. The latter group reported significantly more cognitive difficulties than those with a university education.

Fatigue had a major impact on daily life and people with heat sensitivity rated their health as significantly worse than those who were not heat sensitive. All aspects of health related quality of life were rated significantly higher by those working full or part time compared with those who were not working.

What does it mean?

In this study, those able to work reported significantly less fatigue than those not working. In addition, people who did not experience heat sensitivity had a greater capacity to work. Previous studies have shown that heat sensitivity increases fatigue so the two effects may be linked together. The researchers suggest that fatigue is a key symptom in MS as it has a major influence on both ability to work and quality of life.

The authors suggest that those with a higher level of education may be able to stay in work longer because they are more likely to do paperwork. In contrast, anyone who has a more physically demanding job will be more affected by increasing disability and so may be unable to stay in work. They suggest that it is important that people diagnosed with MS at a young age are encouraged to continue their education to a higher level so that they are more likely to be able to work for longer.

As heat sensitivity interferes with the ability to work, they suggest that workplace measures to cool the environment, such as air conditioning, or to cool the individual, such as cooling garments, should be considered.

Flensner G, Landtblom AM, Söderhamn O, et al.
Work capacity and health-related quality of life among individuals with multiple sclerosis reduced by fatigue: a cross-sectional study.
BMC Public Health. 2013 Mar 15;13(1):224. [Epub ahead of print]
abstract
Read the full text of this paper

More about working with MS

The MS Trust information At work with MS can be read online. It has useful information on:

  • Recognising early potential difficulties at work
  • Developing strategies and adaptations to manage issues at work
  • Working in partnership with health professionals and employers to find the most effective solutions
  • Employment rights
  • Balancing work and other aspects of life

More about fatigue and heat sensitivity

Fatigue is a common symptom in MS but there are ways to manage it including planning carefully, deciding on priorities and putting aside the least important tasks, asking others to lend a hand and pacing yourself carefully. You can read more about fatigue in the A to Z of MS or order our book Living with fatigue.

Heat sensitivity is also common and can make many symptoms worse including fatigue. There are also several suggestions of ways to stay cool in the A to Z – everything from cool drinks to cooling scarves to air conditioning.

Research by topic areas...

Disease modifying treatments

Sargento-Freitas J, Batista S, Macario C, et al.
Clinical predictors of an optimal response to natalizumab in multiple sclerosis.
J Clin Neurosci. 2013 Feb 25. doi:pii: S0967-5868(12)00501-2.10.1016/j.jocn.2012.04.022. [Epub ahead of print]
abstract

Gasperini C, Ruggieri S, Mancinelli CR, et al.
Advances in the treatment of relapsing-remitting multiple sclerosis - critical appraisal of fingolimod.
Ther Clin Risk Manag. 2013;9:73-85.
abstract
Read the full text of this paper

Fernández O.
Best practice in the use of natalizumab in multiple sclerosis.
Ther Adv Neurol Disord. 2013 Mar;6(2):69-79.
abstract
Read the full text of this paper

Drugs in development

Brown J, William L, Coles AJ.
Alemtuzumab: evidence for its potential in relapsing-remitting multiple sclerosis.
Drug Des Devel Ther. 2013;7:131-8. doi:10.2147/DDDT.S32687.
abstract
Read the full text of this paper

Other treatments

Davies M, Wilton L, Shakir S.
Safety profile of modafinil across a range of prescribing indications, including off-label use, in a primary care setting in england : results of a modified prescription-event monitoring study.
Drug Saf.2013 Mar 13. [Epub ahead of print]
abstract

Co-existing conditions

Montgomery S, Hillert J, Bahmanyar S.
Hospital admission due to infections in multiple sclerosis patients.
Eur J Neurol. 2013 Mar 16. doi: 10.1111/ene.12130. [Epub ahead of print]
abstract

Assessment tools

Ivankovic A, Nesek Madaric V, Starcevic K, et al.
Auditory evoked potentials and vestibular evoked myogenic potentials in evaluation of brainstem lesions in multiple sclerosis.
J Neurol Sci. 2013 Mar 13. doi:pii: S0022-510X(13)00082-8. 10.1016/j.jns.2013.02.005. [Epub ahead of print]
abstract

Dobson R, Leddy SG, Gangadharan S, et al.
Assessing fracture risk in people with MS: a service development study comparing three fracture risk scoring systems.
BMJ Open. 2013 Mar 11;3(3). doi:pii: e002508.10.1136/bmjopen-2012-002508. Print 2013.
abstract

Causes of MS

Magyari M, Koch-Henriksen N, Pfleger CC, et al.
Reproduction and the risk of multiple sclerosis.
Mult Scler. 2013 Mar 18. [Epub ahead of print]
abstract

Correale J, Balbuena Aguirre ME, et al.
Sex-specific environmental influences affecting MS development.
Clin Immunol. 2013 Feb 21. doi:pii: S1521-6616(13)00041-7. 10.1016/j.clim.2013.02.006. [Epub ahead of print]
abstract

Vitamin D

Pierrot-Deseilligny C, Souberbielle JC.
Contribution of vitamin D insufficiency to the pathogenesis of multiple sclerosis.
Ther Adv Neurol Disord. 2013 Mar;6(2):81-116.
abstract
Read the full text of this paper

Paediatric MS

Chitnis T, Tardieu M, Amato MP, et al.
International Pediatric MS Study Group Clinical Trials Summit: Meeting report.
Neurology. 2013 Mar 19;80(12):1161-1168.
abstract

Psychological aspects

Benedict RH, Schwartz CE, Duberstein P, et al.
Influence of personality on the relationship between gray matter volume and neuropsychiatric symptoms in multiple sclerosis.
Psychosom Med. 2013 Mar 15. [Epub ahead of print]
abstract

Physical activity

Prosperini L, Fortuna D, Giannì C, et al.
Home-based balance training using the Wii balance board: a randomized, crossover pilot study in multiple sclerosis.
Neurorehabil Neural Repair. 2013 Mar 11. [Epub ahead of print]
abstract

Benedict RH, Holtzer R, Motl RW, et al.
Upper and lower extremity motor function and cognitive impairment in multiple sclerosis.
J Int Neuropsychol Soc. 2011 Jul;17(4):643-53.
abstract

Prognosis

Scalfari A, Neuhaus A, Daumer M, et al.
Onset of secondary progressive phase and long-term evolution of multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2013 Mar 13. [Epub ahead of print]
abstract

Pregnancy and childbirth

Hellwig K, Correale J.
Artificial reproductive techniques in multiple sclerosis.
Clin Immunol. 2013 Feb 15. doi:pii: S1521-6616(13)00027-2. 10.1016/j.clim.2013.02.001. [Epub ahead of print]
abstract

Charles JA, Tremlett H, Lu E, et al.
Disease-modifying drugs for multiple sclerosis in pregnancy: A systematic review.
Neurology. 2013 Mar 12;80(11):1068-9.
abstract

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