Workplace Adjustment Measures to Maintain the Ability to Work of People with Multiple Sclerosis

Abstract

Background: Multiple sclerosis (MS) leads to early retirement in one-third of patients. The aim of this study is to analyze the difficulties at work and to collect suggestions for support measures at the workplace to maintain the ability to work for people with MS. Methods: Qualitative interviews were conducted with 20 people affected by MS. The participants’ experiences with workplace support were summarized and suggestions for workplace measures were presented. Results: Lack of offers of health-related measures and missing adjustments of the workplace has been analyzed. Offering flexible working hours and measures against fatigue is desired. Intensifying the cooperation between labor market service, health care providers and companies can help reintegrate affected people. Conclusions: Workplace education about MS and health-related measures is needed. Technical adaptations and flexible working hours can support in maintaining workability. Measures against fatigue must be developed and companies must set further measures to support people with illnesses.

1. Introduction

Multiple Sclerosis (MS) is a chronic inflammation of the central nervous system, which can lead to cognitive and physical deficits and limitations [1]. These can range from visual disturbances, sensory impairments [2], mental disorders [3], mobility limitations, fine motor skill disorders [2], coordination impairments [4] and neuropsychological disorders [5] to fatigue [2]. Globally, the number of people with MS is estimated at 2.8 million [6] and the global average prevalence is 36 per 100,000 inhabitants. In addition, a clear north-south gradient of the number of cases of MS is evident [7].

Since MS mostly affects employed people aged between 20 and 40 years, it is—in addition to the individual burdens—of economic importance, affecting the human capital of a society. Half of the people with MS develop limitations in the first 15 years of the disease, some of them severe, which can result in a loss of the ability to work [1]. In general, early retirement caused by MS is recorded in about 30% of patients [8]. In Austria, disability retirement is already claimed by 11.5% of people with MS with a milder form of the disease (Expanded Disability Status Scale of 0–3). This has particular impact on health insurance providers, as well as on the socioeconomic impact of early retirement [9]. The economic losses that result from early retirement affect an organization’s competitiveness, too. Many of these associated costs can be prevented or minimized through investment in health and safety [10].

Although various governmental support measures for people with MS and other chronic diseases are already offered in Austria, few, if any, measures are promoted and implemented at the workplace by the employer so far. As MS is a disease that manifests itself in different ways in people affected, workplace interventions tailored to individual needs are necessary to protect their ability to work.

This is in line with expert interviews in Austria from health and social services who are working with people with MS. Additionally, the classification of work tasks should be adapted to the individual needs of patients, and measures against the increased feeling of fatigue at work should be introduced. Although many of these adjustment measures have been discussed in the literature, they are still not widely implemented in practice, as confirmed by both experts and the current study findings [11].

2. Materials and Methods

2.1. State of Research

So far, little research has been conducted on how employed people with MS can be supported in the workplace to keep them fit for work. In the following pages, previous studies on workplace difficulties and maintaining the ability to work of people with MS are presented and discussed.

2.1.1. Workplace Difficulties for People with MS

Honan et al. [12] have dealt with workplace difficulties, which, in addition to illness-related symptoms and limitations like fine movement, mental function, fatigue-related movement and psychological aspects, also shed light on difficulties in the working environment. Especially workplace inaccessibility, non-supportive workplace and work/home balance difficulties were perceived as limiting for people with MS. Furthermore, it was discovered that people with MS who suffer from physical difficulties (i.e., mobility limitation, workplace inaccessibility) increasingly tend to withdraw completely from work [12]. It was found that workplace factors can cause work-related stress, which results in physical and psychosocial hazards [13]. A reduction in working hours is most often requested when they suffer from increased fatigue [14]. Cognitive difficulties (i.e., memory difficulties) and external work influences (i.e., difficulties with working from home) on the other side lead to changes in the type of work performed. External work factors seem to influence the longevity of future work [12]; however, the importance of working environment is still underestimated. Especially features like flexibility of the company and company’s attitudes and policies have been underrepresented so far. Often, employers fail to provide support at the workplace or suitable accommodation in general [15]. A study by Slavkovic et al. [16] went one step further and introduced the negative effect of poorly adjusted work processes for people with MS [16]. Due to the different range of disease-related symptoms that MS can cause, specific employment assistance is needed in an early point of time to avoid potential problems at the workplace. Therefore, early and sometimes small changes in the occupational environment can help MS patients to retain their workability [17].

2.1.2. Suggestions of Support Measures in the Workplace to Maintain Ability to Work

As early as 1992, the importance of early adaptations in the world of work for people with MS was pointed out, especially with regard to the possibility of a job adjustment (e.g., change of a standing to a sitting job position) and the necessary technologies (e.g., use of an ergonomic mouse) [18]. Based on their study, Roessler et al. [19] are convinced as well that working people affected by MS can influence their disease course by taking early measures in their work environment. These include flexible working hours, home office or reduction in working hours. Priority must be given to identifying those who have the highest probability of occupational disability [19]. The results of the study conducted by Sweetland et al. [20] showed similar empirical evidence. Early interventions promote the reduction in or elimination of workplace barriers before they jeopardize job retention for employees affected by MS [20]. The important thing here is that adjustments to the workplace must be made accordingly before, rather than during, a time of crisis [21].

Several studies have identified the following factors as promoting retention of work ability: effective health-promotion services, a flexible work schedule, support from work colleagues, regular physician check-ups and the provision of job-related accommodations by supervisors [22,23]. Leslie et al. [23] added to this the importance of adequate air conditioning, departmental transfers, general support after disclosure of illness and shortening working hours [23].

In terms of implementing requested adaptations in the work environment for people with MS, it was found that requests for accessories and assistive technology were significantly easier to implement. Adaptations to work schedules or hours were more difficult to implement. In addition, low cost was a significant reason for implementing adaptations: if they are easy to provide financially and do not require restructuring of work activities, then they are more likely to be implemented [23].

Studies by Sweetland et al. [20] and Rumrill et al. [22] provided empirical evidence that early interventions such as flexible working hours, ergonomic modifications and supervisor support significantly improve job retention among people with MS. A recent systematic review by Vitturi et al. [24] also confirmed the relevance of early job adjustment strategies for people with MS and highlighted the effectiveness of tailored, multidisciplinary interventions like structured job accommodation strategies and the benefits of interdisciplinary support.

2.1.3. Need for Training Sessions About MS at the Workplace and a Central Point of Contact

Why there are so few interventions for working people with MS so far can be explained as follows. On the one hand, faulty knowledge about the different forms of support for MS-affected people is stated. On the other hand, poor participation in such programs for fear of disclosure of the disease and possible discrimination in the work environment was ascertained. Requesting adjustments in the workplace for people with MS is often discouraged so that they do not identify themselves as having a chronic disease [25]. It is of high importance that employees with MS receive information and support in order to respond before barriers at work become insurmountable. This shows again how valuable early interventions can be [17].

2.2. Methods

For this empirical study, qualitative interviews in biographical form were conducted with people affected by MS, for which a guideline was used. To justify the qualitative research design, it should be noted that up to this point no systematic research procedures can be found for the chosen research questions, and therefore an inductive approach seems suitable [26]. Sampling was used to capture the widest possible variation among people with MS based on the following criteria: gender, age, place of residence, industry, level of education, work activity, age at diagnosis, occupational status, receiving medical care (including medication), progress of symptoms/disease, years of work already completed, etc. The main criterion was that the participant is working or has been working in order to be able to give a realistic assessment of the work situation for people with MS. The detected research gaps lead to research questions that were conducted throughout this study. Inclusion criteria: adults aged 20–60 with a confirmed MS diagnosis who were employed or had been employed during their illness.

Exclusion criteria: individuals who had never been employed or whose MS diagnosis was uncertain.

Interviews were conducted between May and September 2022.

2.3. Data Collection and Analysis

A semi-structured interview guide was used, covering four domains: (1) disease-related symptoms at work, (2) workplace experiences, (3) support measures and (4) suggestions for improvement. The guide was developed based on literature review and expert input.

Twenty suitable interviewees were recruited via social media based on their demographic characteristics. According to national regulations, formal ethics approval was not required for this anonymized, interview-based study. All participants gave informed consent prior to participation. The interviews were conducted and recorded by telephone and lasted approximately one hour each. The data were subsequently processed anonymously.

Mayring’s summary content analysis (2008) was applied as the most appropriate communication model for this study analysis in order to summarize the main statements of the participants to their core statements [26]. Each interview was conducted by one researcher, and all data were coded and analyzed by this same researcher to ensure consistency [26]. For confidentiality, data from each participant were anonymized.

The degree of disability was reported by the participants based on their officially recognized disability percentage and self-assessed symptom severity, including EDSS levels where available. Data were summarized using descriptive statistics. Frequencies and percentages were used for categorical variables (e.g., gender, symptom type, degree of disability).

2.4. Profile of the Participants

The table (Table 1) provides an overview of the demographic data of the participants which were expressed in absolute and relative numbers:

Table 1. Demographic overview of participants in the study.

Variable	Specification	Number N	Percent
Sex	Female	14	70%
	Male	6	30%
Age	20–30	2	10%
	31–40	11	55%
	41–50	4	20%
	51–60	3	15%
Highest education	Compulsory education	3	15%
	School graduation	1	5%
	Apprenticeship diploma	8	40%
	Active study	2	10%
	Academic degree	6	30%
Years of professional experience	5–10	5	25%
	11–15	2	10%
	16–20	4	20%
	21–30	6	30%
	>30	3	15%
Employment Relation-ship	Marginal	2	10%
	Part-time	2	10%
	Full-time	12	60%
	Maternity leave	1	5%
	Retired	1	5%
	Occupational disability pension	2	10%
Working activity	Sitting	11	55%
	Standing	1	5%
	Sitting + standing	8	40%

Furthermore, participants were asked about MS-specific characteristics, which were also summarized in absolute and relative terms (Table 2):

Table 2. Overview of MS-specific characteristics of the participants.

Variable	Specification	Number N	Percent
Age at Diagnosis	<20	1	5%
	21–30	12	60%
	31–40	6	30%
	>40	1	5%
Medication	Yes	14	70%
	No	6	30%
EDSS score	0–2.5	9	45%
	3.0–5.0	2	10%
	5.5–7.0	3	15%
	>7	1	5%
	No answer	5	25%
Degree of Disability	40%	1	5%
	50%	3	15%
	60%	4	20%
	>60%	1	5%
	No degree of disability	11	55%
Symptoms	Mild	8	40%
	Moderate	4	20%
	Strong	8	40%

In terms of MS-specific symptoms that participants found limiting in their daily work, the following were mentioned (the number of participants who reported that symptom is in parentheses): restriction of walking ability (8), fatigue (7), pain in extremities (3), spasticity (3), psychological problems (3), cognitive disorders (3), coordination and balance disorders (2), fine-motor-skills disorder (2), feeling of exhaustion (1), joint pain (1), numbness (1), weakness (1), bladder emptying disorder (1), migraine (1), muscle pain (1), Uhthoff symptom (1) and trigeminal neuralgia (1).

The description of the disease-specific symptoms of the participants is consistent with the results of previous studies. Above all, fatigue was identified [21,27,28,29], as well as cognitive problems [21,27,28], muscle weakness [27], weakness [27], restriction of walking [29] and balance difficulties [29].

To summarize, all 20 participants reported symptoms limiting their work, including fatigue, mobility issues and cognitive impairments. Regarding experienced support measures, 12 participants mentioned having access to flexible working hours, breaks and employer consideration. All 20 expressed a desire for additional support, such as ergonomic work setups, home-office options and anti-fatigue interventions. Furthermore, all participants disclosed their health conditions at work, either voluntarily or due to external pressures.

3. Results

In response to the question “Which MS-related symptoms limit you in your everyday work?”, participants reported the following results based on semi-structured interviews. Participants were asked: (1) Which MS-related symptoms limit you in your everyday work? (2) What support measures have you experienced at your workplace? (3) Which types of support would you wish for? (4) Did you disclose your illness at work, and how was it received?

3.1. Physical Limitations and Fatigue

As already described in the international literature, most of the study participants struggle with illness-related restrictions at work. In this context, fatigue was named as the biggest limitation that confronts working people with MS with the question of changing jobs or cutting back on working hours. Among the 20 participants, fatigue (35%) and walking impairments (40%) were the most frequently reported limitations. Only 2 participants (10%) had access to workplace adjustments, despite 85% reporting symptoms limiting their work performance. Other physical complaints included pain in extremities (3), spasticity (3), fine motor disorders (2), joint pain (1), numbness (1), muscle weakness (1), bladder dysfunction (1), migraine (1), Uhthoff’s phenomenon (1) and trigeminal neuralgia (1).

Fatigue, in particular, was unanimously described as debilitating: “So I come home from work and then all I want to do is sleep. My neurologist always just says I should retire.” (interview respondent 16)

Often, fatigue resulted in serious limitations which could lead to incapacity for work, especially as cognitive problems frequently co-occurred.

Many people with MS often feel alone with their disease-specific problems or do not think that measures at the workplace can actually help them. Therefore, the study participants repeatedly remarked that they had only disclosed their disease at the workplace to a limited extent.

3.2. Cognitive and Psychological Limitations

Several participants reported cognitive limitations such as memory and concentration problems, which became worse under fatigue. Psychological problems, including mood disturbances, emotional stress, and feelings of helplessness, were also described by three participants.

This aligns with symptoms previously described in the literature, where cognitive disorders [27,28] and psychological challenges [3] are frequently reported. Such symptoms often impacted task execution, especially in cognitively demanding or high-responsibility roles. These invisible impairments were also the source of misunderstanding at work and often not accepted as legitimate reasons for requesting support.

3.3. Work Environment and Organizational Factors

A variety of workplace-related issues were described. Participants reported that the structure and design of their work environment played a central role in determining whether they could remain employed or not. Issues included high noise levels, inadequate ergonomic setups, lack of physical accessibility, inflexible working hours and rigid job descriptions.

Participants requested that adjustments in the workplace or of work activities be made, especially regarding sitting and standing activities:

Flexibility was seen as key to coping with MS-related symptoms. Many interviewees expressed the desire for flexible working hours, part-time options, home office and retraining.

“For me, with my cognitive activity, that’s totally worth a lot, if I can also divide my day, in terms of my energy balance, like that.” (interview respondent 7)

“In the end I worked in the office with flexitime and that was great for me because I could organize my day in a regulated way.” (interview respondent 10)

Support varied greatly depending on the employer. Some participants described receiving increased breaks, reduced working hours and the support of company doctors or works councils. Others reported no support at all, even after open discussions with their employer.

The data suggest that workplace support is often dependent on available financial resources and the attitude of management, with smaller companies providing fewer accommodations.

Only two participants stated that they had made use of workplace adaptations, and two others reported using personal assistance.

A general lack of knowledge and awareness among employers was highlighted as a central barrier to the implementation of measures.

3.4. Disclosure and Social Dynamics at the Workplace

All participants eventually disclosed their illness at work, although the timing and experience varied greatly. Workplace disclosure was generally considered useful but heavily dependent on the company size and employer attitude.

Larger companies were perceived as being more open and supportive, while smaller companies posed a greater risk of discrimination or marginalization.

“If there were a general protection, also for someone who has a disease, but not this 50% disability, then many would certainly dare. It would be like a pregnant woman who has maternity leave and knows she has a fixed job and can come back to it, and MS patients often need a certain amount of time to recover or after relapses.” (interview respondent 8)

Some participants experienced positive reactions, including understanding and accommodations from supervisors and colleagues. Others, however, faced pity, avoidance or even rejection.

In general, there was a sense of fear around disclosure due to a lack of protection laws, limited transparency and absence of a clear support structure.

Participants emphasized the need for training sessions for both supervisors and staff, ideally organized by public authorities. There was also a call for a central contact point that could provide guidance on available measures.

“Everything is quite opaque. There are so many people who are not familiar with it. There should be more transparency, like an overview with all the information, a central contact point. There is the Ministry of Social Affairs Service, but they are often not very helpful.” (interview respondent 18)

3.5. Suggestions of Support Measures in the Workplace to Maintain Ability to Work

With regard to support measures at the workplace, concentration problems were noticed due to high noise levels in the office. Therefore, an adjustment of the workplace or an adjustment of work activities in the case of restrictions, as well as attention to sitting and standing activities, is necessary.

“For example, if someone is in a wheelchair and can no longer get into work but works in an office, they should be offered home office. Or if someone cannot walk well anymore, they should get a sitting job and make the workplace handicapped accessible.” (interview respondent 3).

The employer should support employees by offering retraining programs to keep a job. It would also be helpful for maintaining the ability to work to offer flexible working hours, a flexitime model, home office, reduction in working hours and part-time work, so the affected employee can organize their day more according to their needs.

Also, there is a need for an integration agreement after sick leave or a legal safeguard before dismissal in the event of prolonged sick leave. This is especially important if the person concerned does not have a degree of disability.

In companies, it would also make sense to provide psychological support in an advisory capacity in the event of illness. A works council for larger companies can also be helpful in implementing support measures as can a representative or confidant for employees with disabilities. It was also noted that work assistants, representative associations or institutions can offer support to the employer.

Basically, it was noted that the promotion of health at work is an essential factor for all employees, which is why training sessions (yoga, Nordic walking, running, etc.) should be promoted by companies.

In addition to employer-based measures, neurologists and occupational physicians play a key role in identifying limitations early and recommending job-specific accommodations. Collaboration between medical professionals and employers is crucial to tailoring workplace interventions effectively.

4. Discussion: How to Support Employees with MS at the Workplace to Keep Their Ability to Work?

The studies referenced in this paper primarily used job retention, reduction in sick leave, reported satisfaction and functional work ability as outcome measures [19,30]. With this study, challenges of people with MS at their workplace were identified, as well as what kind of support they would wish to be offered by their employers. It was found that there are several measures that an organization can put in place to both facilitate the process of inclusion for those affected in their company and to ensure appropriate health promotion for them. In addition to the measures to maintain the ability to work that have already been researched, the participants made further suggestions on this. To sum up, supportive measures in the workplace can ensure long-term retention of the workability for people with MS.

Answer to research question 1: What challenges, fears and worries do people with MS face in their everyday working lives and what help is needed to overcome them?

4.1. Workplace Difficulties for People with MS

Regarding the perceived difficulties at the workplace, the study participants and the existing literature came to the same conclusion: physical and cognitive limitations lead just as much to withdrawing from work and changes in the type of work performed as external work difficulties [12]. What is more, the importance of the work environment is underestimated [15], especially with regard to workplace inaccessibility, and non-supportive workplace and work/home balance difficulties were perceived as limiting for people with MS [12].

Through this study, it can be confirmed that employers often fail to provide support at the workplace or suitable accommodation in general, which is often a result of a company’s attitude and inflexibility [15]. The study participants noted that there can be no general recommendation on how to support people with MS at the workplace, as disease-related symptoms vary greatly, and each person needs different support measures. Therefore, Rumrill et al. [18] already suggested granting early changes in the occupational environment to help MS patients retain their workability [17]. Awareness must therefore be created in companies about workplace difficulties and early support measures for people with MS in order to offer them individual and suitable accommodations where possible.

4.2. Experiences with Support in the Workplace

As Johnson et al. [21] already noted, even minor support measures from the employer or the state can help MS patients cope with the challenges they face at work. This can also help them to maintain their ability to work in the longer term [21]. Most participants reported feeling supported at work by their employer through consideration, increased breaks, reduced working hours and the involvement of the works council and company doctor. This may, for example, result in an adaptation of work activities when experiencing limitations in the ability to walk and providing special work equipment to facilitate one’s work activities. Also, colleagues offered support by providing assistance whenever possible.

On the other hand, a large part of participants reported a lack of support at work, increasingly because the disease and associated symptoms were not visible. In this context, even open discussions with the employer were often not helpful. This can result from the fact that the Austrian legal system does not include health promotion and support among the employer’s obligations [31,32]. In general, not even a third of European companies implement health-promoting measures [33].

Answer to research question 2: What support measures can the employer put in place to encourage and support MS patients in their everyday working life in order to maintain their ability to work?

4.3. Need for Training Sessions About MS at the Workplace and a Central Point of Contact

In a 2018 study, low participation in workplace health promotion programs for people with MS was attributed to fear of disclosure of illness and potential discrimination in the work environment [25]. Asking for disclosure in this study, most of the participants reported experiencing a positive response from their employer and colleagues after disclosing their illness. In general, the decision whether or not to disclose the illness is increasingly dependent on the size of the establishment. It was assumed that larger companies handled the illness more positively, as the individual’s failure to disclose did not play as large a role as in small companies. From this study, it can be deduced that the first step in helping working people with MS maintain their ability to work is to encourage them to disclose the disease in the workplace. Even smaller companies need to show openness toward chronic illness in this regard in order to be able to offer support to those affected. Another reason for persons concerned to decide to disclose may be the lack of knowledge of companies as well as participants about workplace assistance measures which was identified in the study. This faulty knowledge about the different forms of support for MS-affected people was stated in the literature as well [11,25]. As a result, the introduction of different training sessions at the workplace or a central point of contact to avoid negative reactions about illness-related symptoms is required. With this, companies would also be informed about the range of workplace support measures that they can offer employees as support for their working activities.

In addition to employer-based initiatives, recent literature emphasizes the importance of interdisciplinary collaboration between neurologists and occupational physicians. Their joint involvement is essential for early detection of work-related limitations, for recommending appropriate accommodations and for evaluating the success of workplace interventions [34].

4.4. Suggestions of Support Measures in the Workplace to Maintain Ability to Work

With regard to support measures at the workplace, an adjustment of the workplace or work activities in the case of employee’s limitations, as well as attention to sitting and standing activities, is necessary. The employer should support the employee by offering retraining programs to keep a job. It would also be helpful to offer flexible working hours, a flexitime model, home office, reduction in working hours and part-time work, so affected employees can organize the day more according to their needs. Several authors have already dealt with the current offer of workplace support measures. The positive effects of certain adaptations in the workplace have been increasingly pointed out in this context [11,18,22,23].

Furthermore, all 20 participants agreed that measures against fatigue in the workplace would be desirable, as has already been shown in the literature [11]. Often, this results in serious limitations which can lead to incapacity for work if necessary, as cognitive problems can also occur with fatigue. In this context, Garland et al. [30] analyzed the implementation of adjustable workstations. They found positive impacts on physical health, reducing workers’ absenteeism costs and/or medical costs within their research. In addition, a reduction in all aspects of fatigue and musculoskeletal discomfort as a result of the alternation of standing and sitting work activities was primarily assumed [30].

This results in the implementation of requested adaptations in the work environment for people with MS. Requests for accessories and assistive technology were significantly easier to implement. Adaptations to work schedules or hours were more difficult to implement. In general, low cost was a significant reason for implementing adaptations: if they are easy to provide financially and do not require restructuring of work activities, they are more likely to be implemented [23,24,25].

With this study, the perceptions and challenges of people with MS in relation to their experience in the world of work and the support offered by their employers in Austria have been identified. The focus was to analyze the current measures an organization puts in place to both facilitate the process of inclusion for those affected in their company and to ensure appropriate health promotion for them. Furthermore, suggestions from the participants for measures at the workplace to maintain the ability to work have been analyzed to promote their implementation in Austria.

5. Conclusions and Recommendations

The present study is a pilot study to identify factors supporting people with MS at the workplace to maintain their ability to work in the long term. However, this will require education about MS and the limitations associated with it, as well as measures that can be implemented in the workplace to maintain the ability to work. Second, further approaches will be developed on how to encourage working people with MS to disclose in the workplace. Furthermore, additional research on measures against fatigue is needed. Further research is needed on how collaboration between labor market services, health care providers, and companies can be strengthened.