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Multiple sclerosis symptoms - Impact on patient quality of life

MS symptoms can appear early on and significantly impact patients' quality of life[1][2]

MS symptoms can occur at the start of the disease course, impacting physical functioning, emotional well-being, and quality of life. As MS progresses and damage to the brain accumulates, increasing disability can impose a heavy burden on patients living with MS and their families.[1][2] Patients living with MS may struggle to maintain their normal work activities. A survey of patients with MS, which took place in 2017, found that only 35% of patients with MS were in active employment.[3]

Employment status of patients living with MS*[3]

most stressful rated care

* Based on patient respondents (n = 5 311) to the question ‘What best describes your employment status?’ as part of the Multiple Sclerosis in America (MSIA) 2017 Survey which contained 124 questions and was available to complete online.[3]

Relapse, physical disability progression and magnetic resonance imaging (MRI) disease activity only reflect part of the impact that MS has on patients’ daily lives.[4]

MS symptoms have been associated with a negative impact on patients including[4][5]:

Limitations

Limitations when carrying out intense activities

Daily work

Reduced daily work activities

Fatigue

Fatigue/exhaustion

Functioning in core life

Functioning in core life domains such as work, housekeeping, tending to children and leisure activities

Emotional strain

Practical, emotional and financial strain

MS symptoms that most affect daily function*[3]

ms_symtoms_daily

* Based on patient respondents (n = 5 278) when asked ‘which symptom affects your ability to function in your daily life the most?’ in relation to symptoms experienced within the past 3 months, as part of the Multiple Sclerosis in America (MSIA) 2017 Survey which contained 124 questions and was available to complete online.[3]

MS symptoms can also impact care partners of patients living with MS. In a study evaluating the effects of MS on care partners, fatigue, impaired mobility, bladder difficulties, depression, cognitive function and personality changes were all cited as stressful MS symptoms.[6]

Most stressful MS symptoms as rated by care partners[6]

Most stressful rated care

Data from care partners (N=1333) of individuals in the NARCOMS* registry, a large natural history registry, a database that collects information from MS patient volunteers.[6]

*NARCOMS = North American Research Committee on Multiple Sclerosis

Patient education is crucial in MS

It is important that patients living with MS are informed, educated and have access to multidisciplinary teams to help them manage the complexity of MS symptoms and adjust to their life with MS.[7]

Stay in touch with Janssen (for healthcare practitioners)

References

Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016; 9 Suppl 1:S5-S48.doi: 10.1016/j.msard. 2016.07.003.
White CP, White MB, Russell CS. Invisible and visible symptoms of multiple sclerosis: which are more predictive of health distress? J Neurosci Nurs. 2008; 40(2): 85-102.
Nazareth TA, Rava AR, Polyakov JL, et al. Relapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey. Mult Scler Relat Disord. 2018; 26: 219-234. doi:10.1016/j.msard.2018.09.002.
Ysrraelit MC, Fiol MP, Gaitán MI, Correale J. Quality of Life Assessment in Multiple Sclerosis: Different Perception between Patients and Neurologists. Front Neurol. 2018; 8:729. doi: 10.3389/fneur.2017.00729.
Mortensen G, Rasmussen PV. The impact of quality of life on treatment preferences in multiple sclerosis patients. Patient Prefer Adherence. 2017; 11: 1789-1796. doi: 10.2147/PPA.S142373.
McKenzie T, Quig ME, Tyry T, et al. Care partners and multiple sclerosis: differential effect on men and women. Int J MS Care. 2015; 17(6): 253-260. doi: 10.7224/1537-2073.2014-083.
Shah P. Symptomatic management in multiple sclerosis. Ann Indian Acad Neurol. 2015; 18(Suppl 1): S35-S42. doi: 10.4103/0972-2327.164827.
CP-185211 - January 2021