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The importance of considering quality of life for individuals living with MS


min read

The World Health Organization (WHO) defines Quality of Life (QoL) [1] as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. Chronic conditions such as MS can severely affect QoL [2], with historical data suggesting that individuals with MS may have worse QoL [3] than those with other long-term diseases, such as diabetes or epilepsy.

The importance of QoL in MS is reflected by the focus that will be given to this topic during the forthcoming 38th Congress of ECTRIMS [4] in Amsterdam, The Netherlands. During this meeting, Scientific Sessions will examine the variety of factors that may impact on QoL in individuals with MS [5], while Educational Sessions [6] will consider rehabilitation strategies to improve QoL [7], which has long been recognised as an unmet medical need [8]. It is logical to assume that it is the long-term, chronic nature of MS that most impacts on QoL, due to disease-associated disability and the consequent interference with an individual’s ability to work, pursue leisure activities, and continue usual life roles [8]. However, recent publications have sought to examine both QoL and factors that may impact on this in individuals with newly diagnosed MS.

A variety of factors can impact QoL in individuals with MS

As discussed in the July ECTRIMS Insights article, [9] cognitive impairment in individuals with MS can have a wide-reaching impact on QoL. However, there are a range of other factors that can also significantly impair QoL [8] in individuals with MS. A study examining the impact of gender, age and marital status on QoL in 100 individuals with MS concluded that aging was a significant negative factor [10] in predicting physical domains of QoL. Another factor exerting a negative influence on QoL in individuals with MS was poor sleep quality [11], which was recorded in two-thirds of 1717 individuals studied. Pain, fatigue [12], anxiety and depression [13] have all also been implicated in poorer QoL over time in individuals with MS. These observations were all verified by the findings of a recent systematic literature review [14] that examined 106 published articles and concluded that disability, fatigue, depression, cognitive impairment and unemployment were consistently identified as QoL risk factors in individuals with MS, whereas higher self-esteem, self-efficacy, resilience and social support proved to be protective.

Quality of life in individuals newly diagnosed with MS

Studies have been conducted in an attempt to establish prevalence and severity of pain in individuals recently diagnosed with MS. A recently published study has examined rates of pain, fatigue, depression, and anxiety [15]; rates of symptom co-occurrence; and stability/change in symptom severity during the year following diagnosis for 230 individuals newly diagnosed with either MS or clinically isolated syndrome (CIS). This study used self-reported measures of QoL. Clinically significant symptoms were shown to be generally stable over time and experienced by approximately half of individuals newly diagnosed with MS at some point in the post-diagnosis year at rates of 50.9% for pain, 62.6% for fatigue, 47.4% for depression, and 38.7% for anxiety. Co-occurring symptoms were experienced by a proportion of this group of individuals: 21.3% with two, 19.1% with three, and 17.4% with four. Therefore, it is apparent that symptoms such as pain, fatigue, depression and anxiety, all of which impact on the QoL of individuals with MS, may be present within a short time window following diagnosis. The authors recommend prompt screening and evidence-based interventions as a means of optimising QoL.

In contrast, another recently published study examined the stability/change in QoL [16] in 250 individuals with MS or CIS during the first 12 months post diagnosis using self-reported instruments of QoL. This study demonstrated that QoL was generally good and stable in this group of newly diagnosed individuals and suggested that early assessment after diagnosis may help to predict future QoL.

Promoting continued advances in research

ECTRIMS welcomes this increased knowledge around the factors underlying and influencing QoL in individuals with MS and applauds the efforts of the scientific community to constantly improve our understanding of this key aspect of MS. We remain optimistic that ongoing research will continue to improve our knowledge of how the quality of life of individuals with MS is impacted by their disease.

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ECTRIMS Insights articles are produced with an intent of being a neutral source of information sharing and objective analysis for the MS and neuroscience community. Unless otherwise stated, cited information in our articles does equivocate official endorsement from ECTRIMS.

 

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REFERENCES

[1] World Health Organization. WHOQOL: Measuring Quality of Life. Available at: https://www.who.int/tools/whoqol.

[2] Yalachkov Y, et al. Mult Scler Relat Disord. 2019;30:33–37.

[3] Hermann B, et al. Epilepsy Res. 1996;25(2):113–118.

[4] ECTRIMS 2022. 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis. Available at: https://2022.ectrims-congress.eu/.

[5] ECTRIMS 2022. Scientific Session 11: Quality of life. Available at: https://ectrims2022.abstractserver.com/program/#/details/sessions/63.

[6] ECTRIMS 2022. Educational Session 4 (RIMS): Updates in MS rehabilitation – cognitive and physical functioning and fatigue management. Available at: https://ectrims2022.abstractserver.com/program/#/details/sessions/8.

[7] ECTRIMS 2022. Educational Session 10 (RIMS): Updates in MS rehabilitation: speech and swallowing, bladder and bowel management and sexual health. Available at: https://ectrims2022.abstractserver.com/program/#/details/sessions/48.

[8] Zwibel HL, et al. Am J Manag Care. 2011;17(Suppl 5):S139–S145.

[9] ECTRIMS Insights. How does MS affect cognition, and what are the underlying factors? July 2022. Available at: https://www.ectrims.eu/insights/cognition-and-ms/.

[10] Sabanagic-Hajric S, et al. Mater Sociomed. 2022;34(1):19–24.

[11] Laslett LL, et al. J Neurol Neurosurg Psychiatry. 2022:jnnp-2022-329227.

[12] Kratz AL, et al. Arch Phys Med Rehabil. 2017;98(11):2151–2159.

[13] Wood B, et al. Mult Scler. 2013;19(2):217–224.

[14] Gil-González I, et al. BMJ Open. 2020;10(11):e041249.

[15] Valentine TR, et al. Mult Scler. 2022;28(4):620–631.

[16] Alschuler KN, et al. J Neurol. 2022;269(5):2560–2572.