Work capacity and health-related quality of life among individuals with multiple sclerosis reduced by fatigue: a cross-sectional study

Among people visiting general practitioners, fatigue is the major reason for the visit in five to seven percent [1], and among people in the working population, 21 - 23% have been found to suffer from fatigue [2, 3]. There is no single explanation for what causes fatigue, but it often accompanies chronic diseases [4‐6].

Among individuals with the chronic neurologic disease, multiple sclerosis (MS), the majority, 60-80%, report that they suffer from fatigue [3, 7]. As many as one third of MS-patients noted fatigue as their very first symptom and they noted it before other neurological signs of the disease became apparent [8]. The experience of MS-related fatigue is described as quite distinguished from any prior experiences of feeling tired [9]. Fatigue related to MS is strongly influencing the individuals’ daily lives [3, 5, 10], and reduces their quality of life [11, 12].

Onset of MS often happens in early adulthood, 70% in 20–40 years of age [13] and life expectancy is long, about 65 years of age [14], which means that many people in the Western world are affected. For example, in European countries there are about half a million people diagnosed with MS [15]. In Sweden, prevalence studies show that about 180/100 000 inhabitants have been diagnosed with MS [16, 17]. To a large extent, MS is a female problem and women get MS about twice as often as men; in Sweden, recently reported sex ratios are 2.65 and 2.35 (female/male) [16, 18]. In about 70-80% of cases, the initial course is relapsing-remitting (RR) [13], however, after an average of 15 years and in about 70% of cases, the RR course changes to a secondary progressive course (SP) characterized by increasing disability. In 20%, the course is progressive from the onset, called primary progressive course (PP) [13]. Among young and middle aged adults, MS is the main reason for disability and limitations in functional abilities [19]. The young age of onset in MS makes it one of the major causes of reduced work capacity due to neurologic disease in Western society. Importantly, of all its symptoms, a majority of the individuals with MS consider fatigue as the most handicapping and as their worst problem [3]. Individuals with a RR-course of the disease have, in a large sample and a longitudinal study, been found to have less severe fatigue compared to individuals with a SP or PP-course [20].

Besides fatigue, individuals with MS may experience other problems influencing their work capacity and quality of life. Cognitive difficulties such as memory and attention problems [9, 21] are found as affecting about half of the individuals with MS and described as a leading cause of perceived disability in MS [22, 23]. Among a group of young MS-patients [24], one third showed cognitive impairment in complex attention, i.e. in rapid shifting between competing stimuli, which was assumed to affect their work and career [24].

However, there have also been reported differences between self- graded cognitive function and observed neuropsychological performance [25].

Another well-known feature of fatigue in MS is its association with depression and over 50% experience emotional distress, a symptom intertwined with the experiences of fatigue and health related quality of life [26, 27]. Subsequently, several frequent MS symptoms appear concurrently: fatigue, depression, cognitive dysfunction and, in addition to these, heat sensitivity which has been increasingly focused upon [28‐31]. Heat sensitivity has been shown to increase fatigue and other common MS-symptoms, like pain and difficulties concentrating [31‐33], all of which may influence individuals’ disability and work capacity.

Reduced capacity to work is a major cause of the high cost of MS in society, as are the costs associated with the need for personal care in later stages of the disease. One study showed that the cost of MS in Sweden is about €600 million a year, one third of which are indirect costs associated with loss of production [34]. In a Danish study [35], people with MS left paid work earlier than people in the general population. After five years, 30% of MS patients (n = 2 538) had retired early, compared to 3% in the control group and twenty years later the proportions were 78% compared to 14% respectively. In a Swedish study from the early 1990s, about 50% of those with MS were on full sick leave [36], compared to 37.5% in a recent study [37]. The earlier studies [35, 36] were performed before immune-modulating drugs were introduced and currently many patients with MS are treated with such drugs, the effects of which have been focused on in relation to both fatigue and work ability. These drugs may decrease the development of disability [38] and increase work ability [37], but they may also increase fatigue [39, 40].

This study is part of a wider project on the topic of MS fatigue carried out in Östergötland county in eastern Sweden by our research group [3, 31, 41]. In this study, work capacity and health related quality of life (HRQoL) among individuals diagnosed with MS aged 65 or younger were investigated and, further, whether work status and HRQoL can be predicted by background factors, fatigue, heat sensitivity, cognitive dysfunction, emotional distress or degree of disability were analyzed.

This study is a cross-sectional study and a questionnaire was used to collect the data. The response rate, nearly 80%, is consistent with what is common in similar studies. In this study, the women were somewhat older than the men and were also more often retired due to the disease, while more men reported they had work capacity. Regarding civil status, level of education, course of disease and disability or pharmacological treatment, there were no significant differences between women and men, except for work capacity.

Fatigue proved to be a significant factor influencing work capacity. Those participants who had the capacity to work reported significantly less fatigue compared to those with no capacity to work. Another fact was that the level of work capacity was statistically significantly higher among those participants who were not sensitive to heat, while those who were sensitive to heat showed significantly more often a non-capacity to work. In a previous study, heat sensitivity was found to significantly interfere with and also increase fatigue [31]. In this study, fatigue could be seen as a key symptom influencing both work capacity and HRQoL.

Similar to the findings in this study, Krokavcova et al. [54] found that patients with self-rated good health are more likely to be employed. In this study, participants who had the capacity to work graded both better health and HRQoL than those with a non-capacity to work.

Interestingly, a higher level of education was shown as a significant predictive factor for work capacity in this study. The reason for this may be discussed in terms of disability level and work of a person, which demands that the person is movable, or that educational attainment has not been disrupted due to MS. This might be dependent of the age at onset of the disease [24]. In the present study, just a few percent of the participants (5.5%) had onset of the disease before 20 years of age [31]. Blue collar work usually consists of physical labor which naturally is influenced by actual disability, while work requiring higher education might more often be paperwork or white collar work. This result indicates the importance of supporting young MS-patients in continuing their education, even at a higher level. This would also be in line with the results presented by Glad and colleagues [26], who found that having a RR-course, higher education and light physical work were predicting factors for being able to remain employed.

Another interesting aspect of the increased work capacity of patients with higher education is that cognitive problems in MS are a common feature. However, obviously, in this study, such problems did not interfere with work, probably based on intellectual processes, which required higher education. However, MS is a complex disease and regarding fatigue, multiple factors might interact and influence both fatigue and cognitive function. In this study in the linear regression analysis, fatigue and cognition were found as contributing factors in the domain of bodily pain and vitality. Pain may interfere with and disrupt an individual’s attention and concentration, but also influence fatigue. An important question is if cognitive problems in MS sometimes fluctuate and are secondary to fatigue. This should be of interest to study further. However, fluctuations of cognitive difficulties in MS have been found in relation to a heat environment [31‐33]. In one study, cognitive difficulties were reported as eased when the individual used a cooling-suit [29], which also should be of interest for further investigations.

Age appeared as a predictor for capacity for work. In a correlation analysis we found that age and having children were closely correlated (r_s = 0.78) why we chose to keep age as the independent variable. In our original hypothesis, however, we paid an interest in MS patients with small children since this situation may increase their level of fatigue. As age appeared as a predictor we also suggest that it stands for having small children.

Quality of life was assessed as significantly higher among those who worked, a result also found in earlier studies. Obvious in this study was that fatigue was a significant factor influencing all domains of health-related quality of life, except role-emotional and mental health, while cognition was a significant factor influencing two of the domains, bodily pain and vitality. In the domain of role-emotional, heat sensitivity appeared as a significant influencing factor which might be understood as limiting the individuals’ social life activities.

The impact of fatigue on quality of life is obviously connected to work ability, a central function in everybody’s life. For natural reasons, the risk of isolation in society increases both through unemployment and the obstacles it places to participating in family life on equal terms. In conclusion, the impact on these domains could very well affect the individual’s sense of coherence which is central to the individual’s perception of wellbeing. As fatigue is a symptom with a severe impact on quality of life and work capacity, it is important to find the organic cause which, in the case of MS, justifies a patient’s sick leave and disability pension.

Another point of view is that being able to work is of importance for the quality of life of people with chronic diseases. People with MS, should have the opportunity to work part-time as long as possible. As people with MS are often affected early on in life, their occupational development is more difficult. The fact that young people may be stopped by MS from working at all should also be taken into account.

Apart from disability measured by EDSS, the fact that heat sensitivity interferes with work capacity suggests that organising cryotherapeutic approaches in the work place, such as air conditioning, cooling garments and disability friendly measures should be put in place.

This article also focuses on fatigue as a common and serious symptom in MS already at the onset and the following stages of the disease. For example, general practitioners should take MS-fatigue into consideration when young patients complain about tiredness. Subsequently, it is necessary that patients are properly diagnosed early on in the course of a disease like MS, indicating that physicians should be careful when diagnosing a common symptom like tiredness or mental/physical exhaustion in young people, especially females. However, all patients who complain of fatigue cannot be referred to a neurologist. The Swedish sick leave system relies on patients being diagnosed. Clear recommendations are made in order to determine the appropriate sick leave period with a specific diagnosis. This means that a patient without a specific diagnosis, i.e. a rather symptomatic description, like tiredness, pain, etc., may find it difficult to receive financial compensation from the Swedish sick leave insurance system. One study from our group has revealed that although a very high percentage of MS patients showed no sign of neurological dysfunction when physically examined, in fact, almost 25%, suffered from pathological tiredness – fatigue – as the only subjective symptom [41].

Work capacity and HRQoL among individuals diagnosed with MS are highly influenced by fatigue which, thus, can be considered as a key symptom. Work capacity was also influenced by heat-sensitivity, cognitive difficulties and emotional distress and significant predictive factors besides fatigue were physical disability, age, sex, and educational level. Remaining at work also gave a better HRQoL.