Aspects affecting quality of life in patients with multiple sclerosis

Overview

Multiple sclerosis is a chronic autoimmune disease with elements of neurodegeneration typically affecting young adults of working age. Although the disease is currently very well amenable to therapeutic intervention, it is still not definitively curable and the patient is left to deal with the chronic nature of the disease for the rest of his/her life. Currently, thanks to modern therapies, we are trying to maintain the clinical and radiological stability of the disease. At the same time, however, it is also necessary to take into account the fact that the focus should not be “only” on the disease itself, but primarily on the patient who is living with the disease. This is why the term “quality of life” (QoL) is increasingly being heard across the spectrum of medical specialties, and the concern to increase or maintain the level of QoL is reflected in the therapeutic approach. At the same time, early diagnosis and treatment of potential comorbidities that are closely related to MS and may contribute to reduced QoL is important. The ability to assess the patient‘s condition –⁠ both clinically and biopsychosocially –⁠ is a prerequisite for early identification of risk factors and implementation of appropriate interventions leading to improvement or maintenance of QoL.

Keywords:

Quality of life – Multiple sclerosis – Fatigue – cognitive dysfunction – evaluation of quality of life

This is an unauthorised machine translation into English made using the DeepL Translate Pro translator. The editors do not guarantee that the content of the article corresponds fully to the original language version.

 

Introduction

Multiple sclerosis is a chronic autoimmune disease with elements of neurodegeneration that typically affects young people of productive age. The first symptoms usually appear between the ages of 20 and 40. Although we can currently treat this disease very effectively, we are still unable to cure it completely, and patients have to cope with the chronic nature of the disease for the rest of their lives [1].

Clinical parameters are mostly focused on evaluating the effectiveness of therapy and can help respond to objective health needs. However, it is also necessary to take into account the individual needs of the patient, as these may be completely different from the objective health needs given by the basic diagnosis and may have a significant impact on the quality of life (quality of life; QoL) and, in the long term, on the success of the therapy itself. This is one of the reasons why the interest in improving or maintaining QoL is increasingly reflected in medical decision-making from the very beginning of therapy across all medical disciplines [2].

This text aims to provide a comprehensive overview of the issue of QoL in patients with MS in line with current knowledge. The individual sections will discuss which factors influence QoL and to what extent, the benefits of studying QoL for clinical medicine, and the current trends and possibilities for evaluating and quantifying this extremely broad but significant variable. Attention will be focused primarily on health-related QoL (HRQoL), which includes not only clinical indicators but also a number of other, often crucial indicators that influence the treatment of patients with incurable diseases [3].

 

Definition and significance of QoL and HRQoL

Quality of life is currently becoming the focus of many different theoretical and clinical disciplines. However, given the complexity and broad use of this term, it is not possible to establish a single specific definition that would suit all individual disciplines.

In the most general sense, we can say that QoL is now understood as the result of the interaction of many different factors (e.g., economic, social, health, or environmental) that cumulatively and often through unknown mechanisms affect individuals and society as a whole [4].

For healthcare purposes, HRQoL is specifically distinguished, which can be defined as a subjective feeling of well-being associated with illness or injury, treatment, and its side effects.

HRQoL can be divided into physical (physical health-related QoL; PHRQoL) and mental (mental health-related QoL; MHRQoL) health components. The study of HRQoL focuses on identifying risk and protective factors and their impact on the overall subjective experience of the patient [3].

Quality of life is becoming increasingly important at both the individual and societal levels. QoL assessment often brings a new perspective to the therapeutic process, emphasizing the patient's subjective priorities and wishes.

This new information can often fundamentally change the course of treatment in order to improve the patient's QoL, especially in the case of incurable, chronic, and potentially disabling diseases, and where treatment is burdened with side effects that have a long-term impact on the patient's experience [2]. In this context, it should be noted that an approach that takes into account the patient's QoL corresponds well with the generally accepted definition of the World Health Organization (WHO), which describes health as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity [4].

 

HRQoL assessment methodology

General or disease-specific scales can be used to assess HRQoL. They can address subjective experiences as well as objective symptoms, or combine both approaches. Subjective indicators include the level of physical self-sufficiency, experience of symptoms, satisfaction in family, social, and working life, and the standard of living.

Objective indicators include the overall clinical picture, frequency and quality of social contacts, and other measurable indicators [5].

Generally focused questionnaires assessing QoL that are also validated for use in patients with MS include the 36 Item ShortForm Health Survey (SF 36) [6], the European Quality of Life 5 Dimensions Questionnaire (EQ 5D) [7], the Sickness Impact Profile (SIP) [8], the Life Satisfaction Questionnaire (LSQ) [9], the WHOQOL BREF [10], and the Quality of Well Being Scale (QWBS) [11]. Specifically for MS, the Multiple Sclerosis Quality of Life Instrument (MSQoL 54) [12] is often used. This questionnaire is based on the general (not targeted at MS patients) Short Form QoL questionnaire with 36 questions (SF-36), which is tailored to MS patients. This specific questionnaire examines 14 areas that affect QoL, namely physical health, limitations in activities due to physical health, limitations in activities due to mental health, pain, mental well-being, energy and fatigue, health perception, social activity, cognitive function, fear about one's own health, sexual function, satisfaction with sexual function, change in health status, and subjective assessment of overall QoL [12].

In 2023, a pilot study (104 respondents with MS) was published that dealt with the validation of the Multiple Sclerosis Quality of Life Questionnaire –⁠ 54 (MSQOL-54) in Slovakia. The study focused on the linguistic and cultural validation of the MSQOL-54 questionnaire, which assesses the QoL of patients with MS. Using factor analysis and statistical tests, it was confirmed that the questionnaire has high reliability and validity, with significant correlations found between physical health, pain, and disease duration [13].

 

Factors affecting  the QoL of patients with MS

Factors affecting the QoL of patients with MS can be divided into demographic, clinical, and psychosocial factors. This division, including a more detailed specification of the issue and possible solutions, is shown in the following diagram (Fig. 1).

 

Demographic factors affecting QoL

From a demographic point of view, factors that generally reduce QoL in patients with MS include older age at diagnosis, lower level of education, and lower overall socioeconomic status [14].

Lower age at diagnosis is associated with a more positive subjective assessment of one's own health. However, this only applies to QoL related to physical health. In contrast, QoL related to the psychological experience of the disease is higher in older individuals, which can be explained by the psychological adaptation to living with the disease that patients achieve over time [14].

Studies examining differences in QoL between men and women with MS have shown inconsistent results [14,15].

In terms of marital status, some studies have found that patients living in a permanent relationship achieved better QoL scores than patients living alone [15].

 

Clinical factors affecting QoL

The Extended Disability Status Scale (EDSS) is widely used in clinical practice to quantify the neurological impairment of patients with MS [16]. In general, higher scores on the scale are strongly associated with poorer QoL [17,18]. 

Within the individual subsystems included in the EDSS, motor impairment (often accompanied by spasticity) [17,18], followed by reduced sensitivity, sexual dysfunction, and balance problems [17] have the greatest impact on QoL.

The duration of the disease and relapses in the last 3 months also have a negative impact on QoL [17]. Progressive types of MS (primary and secondary), which are usually associated with more severe neurological impairment, are associated with poorer QoL compared to relapsing-remitting (RR) types [17–19]. However, due to significant advances in therapeutic options, the time to progression to the secondary progressive form of MS is also considerably prolonged.

Clinical factors that affect the QoL of patients with MS can best be influenced by early and appropriately selected MS therapy [17–20].

According to a recent study from 2024, which examines QoL in patients with MS, the QoL of patients treated with high efficacy therapy (HET) from the outset is higher than that of patients treated with an escalation approach (less effective treatment at the outset and its subsequent escalation linked to disease activity) [21]. A total of 269 patients were included in the study, and QoL was assessed using The Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire [22].

A number of studies also confirm that the severity of factors such as fatigue, pain, and cognitive impairment, which are not given much attention in the EDSS, also play a significant role, and not only at the time of self-assessment. These factors also predict a deterioration in QoL over the next 10 years [17].

The impact of pain and QoL in patients with MS was addressed in a study by Miertová et al. (2024). The results showed that pain negatively affected aspects of patients' lives, especially mood, sleep, walking, and daily activities. Higher pain intensity was associated with lower overall QoL, highlighting the need for targeted and individualized treatment [23].

 

Fatigue and QoL in patients with MS

Fatigue is defined as an obstacle perceived by the patient or caregiver in normal daily activities.

The mechanism of fatigue development in MS is not fully understood and probably involves both primary factors (directly related to CNS damage, especially to the thalamus and prefrontal cortex) and secondary factors (e.g., depression, sleep disorders, or side effects of treatment) [24].

Fatigue in MS patients is one of the most common and debilitating symptoms. The prevalence of fatigue in MS patients ranges widely from 18.2% to 97% [24]. This wide range of reported values is due to the fact that different criteria and scales are used to assess fatigue, and also to the fact that, for example, fatigue is less severe in patients in the early stages of MS than in patients with more advanced disease [24].

The Fatigue Severity Scale (FSS) questionnaire, which assesses the degree of fatigue and contains 9 items, is most commonly used to assess the degree of fatigue [25].

Another is the Fatigue Impact Scale (FIS) questionnaire, which contains 40 items and deals with the impact of fatigue on normal activities of daily living during the last month [26]. The impact of fatigue on normal life is mapped by the Multidimensional Assessment of Fatigue (MAF) Scale questionnaire, which includes 16 items assessing fatigue during the last week [26].

These questionnaires are not specific to patients with MS and have not yet been validated in the Czech language.

A systematic review by Oliva Ramirez et al. (2022) shows that these questionnaires have been used in many studies examining the impact of fatigue on QoL. These studies have demonstrated a negative correlation between fatigue and QoL in patients with MS [24].

When attempting to treat fatigue therapeutically, we always start with a careful medical history. This allows us to define in more detail the factors that contribute to fatigue and that can be specifically targeted therapeutically (e.g., depression, neuropathic pain) [27]. In the case of pain, it is not surprising that it has a significant impact on patients' QoL. As one of the symptoms of the disease, it is described in an average of 61% of patients, with moderate pain being reported most frequently. A practical tool for assessing pain levels in clinical practice is the Visual Analogue Scale (VAS) [28]. If we want to assess the impact of pain on QoL in more detail, we can use a more appropriate tool, such as the self-assessment Medical Outcomes Study (MOS) Pain Effects Scale (PES), which is part of the Multiple Sclerosis Quality of Life Inventory (MSQLI) questionnaire [29].

Physiotherapy and psychotherapy should be an integral part of fatigue therapy. Regular aerobic exercise, such as walking, swimming, or cycling, has been shown to reduce fatigue and improve physical fitness in patients with MS [27].

In psychotherapy, cognitive behavioral therapy (CBT), which also includes training in relaxation techniques, stress management, and planning activities so that they are evenly distributed throughout the day and week, can have an effect on reducing fatigue [27,30].

As part of pharmacological therapy for MS fatigue, the use of psychostimulants may be considered (e.g., modafinil is reported in foreign studies [31]). However, their effect has not been conclusively proven, and it is always necessary to take into account the possible side effects of these drugs and/or their drug interactions, as well as the prescription restrictions that apply in the Czech Republic.

In a very recent study (11/2024), the authors compared the effect of combined therapy for fatigue using CBT and modafinil. The results show that modafinil, CBT, and a combination of both approaches have a positive effect on reducing fatigue [32].

 

Cognitive dysfunction and QoL in patients with MS

Cognitive impairment can occur at all stages and in all forms of MS, but it is more common in progressive variants. After the first attack, cognitive impairment is evident in 20–25% of patients [27]. The presence of cognitive deficits in patients in the early stages of MS is associated with a higher risk of disability progression and is linked to a more aggressive form of the disease [33]. In RR-MS, cognitive impairment is present in 30–45% of patients, and in secondary progressive MS, it is present in 50–75% of patients [27]. In primary progressive MS, data on the incidence of cognitive impairment vary considerably, but it is estimated to be present in about half of patients [34].

Cognitive deficits are also related to employment and work performance and can generally affect the management and course of the disease [35,36].

A recent study by Bergmann et al. found that only the domains of memory and motor skills were significantly predictive of reduced QoL. The motor skills domain correlated significantly with executive functions, attention and information processing speed, and executive functions [36].  

Therapeutic approaches to the prevention and treatment of cognitive deficits in patients with MS include both pharmacological and non-pharmacological methods. Non-pharmacological methods include, for example, cognitive rehabilitation, which is a set of methods aimed at improving or maintaining cognitive functions through specific exercises and strategies. There are various approaches, the most effective of which are individually tailored programs that target specific areas of cognitive impairment. Studies have shown that regular training focused on repetition and practice of specific cognitive tasks can lead to improved cognitive function and thus improve the daily activities of patients with MS [37].  

In terms of pharmacological interventions, it is particularly important to identify the transition from RR-MS to the secondary progressive phase, which is associated with a higher risk of cognitive impairment, at an early stage and to adjust medication in a timely manner.

 

The impact of comorbidities on QoL in patients with MS

The conclusions of a study by Mallucci et al. (2024), which evaluated the impact of comorbidities in MS patients on QoL, were recently published. The study found that 53.8% of the 755 MS patients monitored had at least one comorbidity. The most common comorbidities were arterial hypertension, depression, and anxiety. The presence of comorbidities was associated with a lower QoL score and greater work difficulties [38].  

The treatment of MS and comorbidities can be significantly more complex. For example, certain diseases may limit MS therapy (e.g., active oncological diseases may be a contraindication to the use of highly effective MS therapy).

The management of MS therapy should include a comprehensive approach focused not only on MS itself, but also optimally on the prevention and/or management of comorbidities with the aim of improving patients' QoL. Multidisciplinary care and an approach focused on the individual needs of each patient   play an important role here [38].  

 

Psychological factors affecting the QoL of patients with MS

Depression and anxiety are among the most studied psychosocial factors affecting QoL [3]. The question is whether depression and anxiety are part of MS or whether they are comorbidities. Depression is present in MS patients almost twice as often, and anxiety up to three times more often than in the general population. In patients diagnosed at a younger age, symptoms of depression and anxiety were observed more frequently, but the frequency of these difficulties did not increase with the duration of the disease, which may indicate the effect of developing coping strategies for leading a fulfilling life even with the disease [38].

The impact of depression on QoL is almost as significant as the degree of neurological impairment determined by the EDSS score [3].

Approximately 68% of patients suffer from varying degrees of depressive symptoms, but only about one-third of these patients undergo some form of treatment, whether pharmacological (e.g., antidepressants) or non-pharmacological (e.g., psychotherapy) [38]. Therefore, the treatment of depression cannot be neglected, especially when striving for a holistic approach to the treatment of patients with MS. The assessment of the degree of depressive symptoms in clinical practice is also important because patients with depressive symptoms have lower adherence to treatment [17]. The degree of subjectively perceived stress is also important. Some studies evaluating the association of patient personality with QoL mention a link between extroversion and better QoL and, conversely, introversion and poorer QoL. The patient's perception of the disease and approach to dealing with difficult situations also have a significant impact on QoL. Acceptance of the disease, higher self-esteem, and confidence in one's own abilities play a role in predicting better QoL. The patient's mental resilience has a protective effect, as does social support for active participation in social life [17].

Interventions in the area of psychosocial factors are typically aimed at strengthening protective factors. Among the interventions with promising prospects for use in clinical practice are CBT and mindfulness-based approaches [14]. Targeted therapeutic intervention can be helpful in improving QoL in patients with MS [14].

 

Social factors affecting QoL in patients with MS

Employment is extremely important for QoL, and not only for patients with MS. In contrast, unemployment and low socioeconomic status are significant risk factors for a deterioration in QoL [14].

There is an interesting correlation between the QoL of MS patients and the so-called subjective quality of work life (SQWL). SQWL refers to how an individual perceives and evaluates their work environment, conditions, job content, workplace relationships, work stress, work-life balance, and overall job satisfaction. Unlike objective indicators (e.g., salary, number of hours worked per week), SQWL focuses on the personal experiences, attitudes, and emotions of the employee, which may include a sense of meaningfulness in work, perceived support from supervisors and colleagues, stress levels, or a sense of personal growth. This concept therefore focuses on individual assessment and employee satisfaction in the work context [14].

Employment is an important protective factor that increases QoL [14]. Working patients with MS have a higher QoL than non-working patients with MS (including disability and old-age pensioners, students, women on maternity leave, and the unemployed) [14].

However, in terms of SQWL, people with MS achieve the same (in the case of the self-employed) or even higher (most employees) levels of satisfaction than the general population. Of the individual aspects of SQWL, MS patients value working relationships with colleagues and superiors, sufficient free time, and cleanliness in the workplace the most. In contrast, salary does not play as big a role as it does in the general population [39].

The intervention can focus on supporting social relationships and community integration.

 

Support for MS patients from family and friends

Support for MS patients from family and friends significantly improves QoL, and not only for MS patients. Studies show that stable and positive relationships provide emotional support, reduce stress, and promote mental health. Family psychoeducation helps family members better understand patients' needs and support them more effectively, which contributes to improving their mental well-being [40,41].

 

Involvement of MS patients in community and work activities

Work or volunteer activities help MS patients find meaning and remain active in social life. Vocational rehabilitation and flexible working conditions enable patients to participate in the labor market, which increases their self-confidence and sense of usefulness. Participation in community activities also ensures contact with other people and reduces the risk of social isolation [40–42].

 

Development of digital support and online communities for MS patients

Online platforms offer a safe space for sharing experiences and provide access to support, not only for patients with limited physical contact options. This digital support reduces feelings of isolation and offers the opportunity to connect with other people living with MS, which has been shown to promote their mental well-being and motivation to lead an active life [41,42].

 

Conclusion

The current expansion of therapeutic options thanks to the development of new, targeted drugs and support for patients in health care have had a significant positive impact on the QoL of patients with MS.

Nevertheless, an MS diagnosis can bring stress and anxiety into a person's life, mainly due to its relatively unpredictable nature and the need for long-term clinical and radiological monitoring.

Currently, there is a whole range of risk factors known to negatively affect the QoL of patients with MS. The most significant predictors of impaired HRQoL include the level of neurological impairment, the presence of depression and anxiety, social isolation, unemployment, and a poorer economic situation. Fatigue and cognitive impairment have a very negative impact on QoL and are more difficult to recognize than commonly assessed clinical factors.

On the other hand, protective factors include psychological resilience, acceptance of the disease, and the development of coping strategies that make life with the disease fulfilling, as well as active participation in social activities, e.g., in the form of employment.

The ability to assess the patient's condition from both a clinical and biopsychosocial perspective is a prerequisite for the early identification of risk factors and the implementation of appropriate interventions leading to the improvement or maintenance of QoL.

At the same time, targeted therapeutic intervention can also be helpful in the form of support and development of protective factors.

It is also beneficial to educate patients, their families, and the general public about MS and current treatment options and comprehensive health care.

 

Conflict of interest

The authors declare that they have no conflict of interest in relation to the subject of this work.