Governmental support measures to maintain the working capacity of people with multiple sclerosis

Abstract

BACKGROUND:

Multiple sclerosis (MS) is a chronic inflammation of the central nervous system that can result in cognitive and physical deficits. It can lead to early retirement in 50% of the cases in the first 15 years of the disease without governmental support and to date, there are only a few studies which focus on measures to support people with MS at the workplace.

OBJECTIVE:

The aim of this study is to analyse the governmental support measures to maintain the working capacity of people with MS and to provide improvements and further approaches for their support.

METHODS:

A two-stage study was conducted by means of qualitative interviews. The first study was conducted using the problem-centred form with 10 experts from the health and social care sector who work with people affected by MS. The second study was conducted using qualitative interviews in biographical form with 20 people suffering from MS.

RESULTS:

The study participants mentioned various suggestions for improving the existing governmental support measures, such as a central support office for illness-related questions, relaxing the strict requirements for support measures, giving the regulation of support measures to federal government, changing the pension system and providing financial support for individual therapies and outpatient therapies. Currently, MS patients lack knowledge about contact persons for MS-specific questions, as well as intensive cooperation between labour market service, health service providers and companies to help find a job.

CONCLUSION:

A combination of the governmental support measures available so far with the proposed optimisations or additions by MS patients and experts can lead to a significant reduction in disease-specific absences and limitations, which in turn results in the preservation of the ability to work. All suggestions from the interviews need to be explored further to investigate a possible implementation.

1 Introduction

Multiple sclerosis (MS) is a chronic inflammation of the central nervous system that can result in cognitive and physical deficits (Hoffmann et al., 2009). Globally, the number of people with MS is estimated at 2.8 million (DMSG Landesverband Hessen, 2020), with an average prevalence of 36 per 100,000 population. Furthermore, a clear North-South divide in the number of MS cases can be observed (King, 2020).

As MS mainly affects working people between the ages of 20 and 40, it is not only an individual burden, but also of economic value due to the effect on the human capital of a society. In the first 15 years of the disease, 50% of people suffering from MS develop limitations, which can lead to a loss of the ability to work (Hoffmann et al., 2009). Physical symptoms of the disease, most notably vision problems or fatigue, as well as emotional aspects such as the work environment, financial dependency or demographic characteristics are among the factors that lead people with MS to retire early, as Coyne et al. (2015) explored in their study. In general, their study participants cited physical and cognitive symptoms as crucial in deciding to stay in the workforce (Coyne, Boscoe, Currie, Landrian, & Wandstrat, 2015). Also, O’Connor et al. (2005) reported mainly illness-related factors that have an impact on working life. The environment, the lack of social support and the little assistance in keeping the job played a significant role in the decision-making process of staying in a job or requesting an early retirement (O’Connor, Cano, Thompson, & Playford, 2005).

In Germany, Neusser et al. (2018) have shown that MS leads to a financial burden on health insurance, long-term care insurance and pension insurance. The reasons for this are on the one hand the onset of the disease at a young age, and on the other hand the risk of a steady progression of the disease (Neusser et al., 2018). Generally speaking, MS causes early retirement in about 30% of patients (Flachenecker et al., 2005). In 2011, the percentage of MS patients in early retirement due to their health status in Europe was calculated to be 35 and the median retirement age of MS patients was between 45.1 and 53.4 years. The variation in these data across European countries may result from differences in overall employee participation and welfare systems. These data suggest an average loss of over ten years of work in their lifetime. Later study results showed that 23% of MS patients took early retirement due to their disease. However, this figure varied by country, with 27% of MS patients taking early retirement in Spain and only 4% in Italy (Karampampa et al., 2011). It should also be mentioned that early retirement can lead to financial and social burdens for the person with MS, such as poverty or poor health care (Johnson et al., 2004).

In Austria, 11.5% of MS patients with a milder form of the disease (Expanded Disability Status Scale of 0–3) claimed already disability retirement, which has especially an impact on health insurance as well as on the socio-economic effect on early retirement (Berger, Kobelt, Berg, Capsa, & Gannedahl, 2017). A study from 2015 suggests that almost 50% of the costs associated with MS can be attributed to losses in work performance. Another study puts the indirect cost of MS at $1.5 million per patient, which is four times the indirect cost of a healthy colleague (Coyne, Boscoe, Currie, Landrian, & Wandstrat, 2015). Furthermore, a study on the global economic impact of MS showed that the indirect costs associated with job loss and early retirement are clearly the largest cost factor (Chandraratna, 2010). Expressed in numbers for Austria, the indirect costs, which result from a loss of productivity due to periods of incapacity to work or early retirement, and the informal help provided by relatives were calculated at under € 14,000 per MS patient in 2010 (Trisolini, Honeycut, Wiener, & Lesesne, 2010). Berger et al. (2017) have analysed the indirect illness costs for Austria additionally in illness levels for the year 2015. A long-term absence (early retirement, invalidity) for patients with a mild course of disease (EDSS 0–3) led to € 6735, for a moderate course of disease (EDSS 4–6.5) to € 14,924 and for a severe course of disease (EDSS 7–9) to € 18,676 (Berger, Kobelt, Berg, Capsa, & Gannedahl, 2017). These data can be compared with the indirect costs in Germany, which are calculated with € 4,500 and € 19,000 per patient per year, depending on the progression of the disease (ÄrzteZeitung, 2016).

Awareness of the day-to-day challenges for people with MS to maintain their jobs, as well as concern about the paucity of assistance provided by the healthcare system to address the occupational needs of those affected, is steadily increasing. Health care providers should therefore aim to minimise the limitations that negatively affect the ability of people with MS to work. This approach, according to O’Connor et al. (2005), can effectively help people with MS maintain their ability to work. This study thus supports the importance of similar support measures for people with MS to address their needs in the workplace and thereby maintain their ability to work (O’Connor, Cano, Thompson, & Playford, 2005).

Even minor support measures on the part of the employer or the state can subsequently help MS patients to cope with their challenges in everyday working life and achieve longer-term preservation of their ability to work (Johnson et al., 2004). Although various governmental support measures for people with MS and other chronic diseases are offered in Austria, it has not yet been investigated how helpful they actually are for maintaining the ability to work. Through an initial study with experts from health and social services who are working with people with MS, it has already been established, that the classification of work tasks should be adapted to the individual needs of patients. Furthermore, measures against the increased feeling of fatigue at work should be introduced (Eberharter & Stummer, 2021).

The aim of this study is to analyse the governmental support measures to maintain the working capacity of people with MS. The focus was placed on the current governmental offer of support measures and the approaches that can be implemented for improvement in order to provide assistance to as many people affected as possible. For this study, experts from the health and social sectors which are working with people with MS were interviewed, as well as people who suffer from MS.

2 Methods

For this research, a two-stage study was conducted by means of qualitative interviews. The qualitative interviews in the first of the two studies were conducted using the problem-centred form (Mey, 2000) with experts from the health and social care sector who work with people affected by MS. The second study was conducted using qualitative interviews in biographical form (Mey, 2000) with people suffering from MS.

Sampling was used to map the greatest possible difference between both the experts and the people with MS. This was ensured for the group of experts based on the following factors: Cooperation with people with MS, gender, urban or rural area, diversity of professional groups/institutions (medical orientation incl. care and rehabilitation; orientation towards employee protection, labour law, financial support, insurance; scientific activities; associations and self-help groups).

Table 1

Central results of the two-stage study

Central result	Findings from experts	Findings from MS patients	Suggestions
Suggestions for improvement for governmental support for people with MS	Status quo on the currently available governmental support measures for maintaining the ability to work of people with MS in Austria.	State support measures taken advantage of so far: Disabled person’s card, personal assistance in the private sphere and care for the disabled, disabled person’s parking permit, elimination of motor-related tax, effects on wage tax equalisation, financial support for the purchase of a car, support for the purchase of a car, heating cost subsidy, exemption from broadcasting fees, financial support for school documents for children, state-funded outpatient physiotherapy and occupational therapy, medical rehabilitation, care allowance, rehabilitation allowance.
	A far-reaching provision of information and advice for employers, employees and those responsible for health and social services is needed to promote governmental support measures.	Centralisation of facilities for the disabled by municipalities to provide a better overview of support measures and assistance offered.	-Providing more information about MS -Centralisation of facilities for support measures
	Social service providers reported a lack of knowledge about governmental support measures and perceived gaps in the respondents’ knowledge especially about the offers of job adjustment and vocational rehabilitation.	No central contact point for questions about support options that has the necessary competence in this area. No clear document that makes it easier for those affected to obtain information.	-Training of the responsible offices to increase knowledge of support measures -Launching a central contact point for affected people
	Less stringent conditions for the approval of state assistance and an expansion of these services.	High effort with which assistance measures must be applied for.	-Strict requirements must be eased so that more people with MS can make use of state support measures
	Disability support should be transferred to the competence of the federal government in order to create more equity for claims and approvals. Up to now, these regulations have been the responsibility of the federal states, which differ considerably in the services they offer, which is why a networking of disability associations, as well as an expansion of associations for the promotion of the ability to work is necessary.	With regard to the system of invalidity pensions, a “partial pension” would make sense for Austria, as there is already a “partial reduction in earning capacity pension” system in Germany. This could promote the preservation of the ability to work by either reducing working hours or claiming a 50% pension. The costs would be shared between the pension insurance and the company and the person concerned would continue to pay taxes. Such an adaptation of the Austrian pension system in relation to incapacity to work due to illness needs to be further researched and implemented if possible.	-Disability support transferring to competence of federal government -Adjusting of the Austrian pension system
	Offering of outpatient rehabilitation, which is possible parallel to work and family, as well as more publicly fully financed MS-specific therapy and neuropsychological offers in all regions. More places/therapy material for neurorehabilitation should be created and both the speciality of neurology for independent practices and the professional profile of occupational physicians should be promoted.	Referring to rehabilitation programmes, a focussed allocation is needed. Expansion of financial support for therapy units of state-financed, outpatient physiotherapy and occupational therapy is needed. Due to the distance to the nearest outpatient physiotherapy and occupational therapy centre, this possibility cannot be taken advantage of in some cases.	-Offering of outpatient rehabilitation -Increase of publicly fully financed therapy
	Higher use of occupational therapists would have a very positive effect on people with MS and can enable individual workplace adaptations.	Suggestions for improvement of the medical rehabilitation services: training for occupational therapists and physiotherapists, expansion of individual therapies, financial support for rehabilitation, outpatient rehabilitation, more targeted allocations, equalisation of allocation and processing of rehabilitation at national level, financial relief for employers, facilitation of approval in case of co-insurance, and in general the facilitation of support measures for the self-employed.	-Higher use of occupational therapists -Training for therapists -More individual therapies -Financial support for patients and employers -Outpatient rehabilitation -More options for co-insurance/self-employers
Missing information about contact point for MS-specific questions	Interdisciplinary support for MS patients would be beneficial, as it is difficult to find the right person for health concerns.	The possibility for people with MS to consult occupational psychologists, rehabilitation counsellors, occupational therapists, psychologists, or similar, to answer their MS-specific questions is currently increasingly unrecognised. However, those who made use of it reported positive experiences and increasingly only bad ones when patients were seeking early retirement due to their illness. Outreach counselling has hardly existed so far and if the initiative does not come from those affected, no flow of information is started.	-Increasing interdisciplinary support -Providing a central contact person
	Training of nurses specifically for MS. A higher use of specialised nursing staff as the first MS contact person instead of or in addition to MS physicians would partly relieve the health care system and enable closer individual care in all regions, as well as partly prevent or shorten hospital stays. This system, which is already being implemented in part in Austria, could reduce medical expenses and hospital costs, which is why it should be further expanded. However, this requires raising awareness in society and the medical profession, because qualified nurses are not yet recognised as the interface between the doctor and the patient, as was analysed in the expert study.	The majority of people with MS turn to professionals who have been trained in MS for MS-specific questions in order to avoid longer waiting times in outpatient clinics. Especially after the diagnosis or in case of questions about care, care levels or pensions, another competent contact person would be helpful, but up to now, nursing staff in hospitals are often not trained enough for MS. Special and sound training for MS is therefore necessary for nursing staff, which would result in a usage of MS patients.	-Educating specialist nurses for MS as an additional contact person
Need for cooperation between labour market service, health service providers and companies	Intensive cooperation between health care providers, labour market service and companies would increase the utilisation of support measures. This results from the lack of knowledge of MS patients about the responsibility of the individual agencies for different matters and the introduction of joint rehabilitation measures or a “case manager” would be a possibility to advise MS patients by one agency in all questions and to avoid the sometimes difficult visits to the authorities. It was also suggested that tax exemption should be sought for those affected.	Labour market service has to work closer with companies in order to offer further training opportunities on the one hand and suitable new job opportunities on the other. In order to maintain the ability to work of people with MS and to find jobs or reintegration for people with illness-related limitations, companies and health service providers must subsequently cooperate more with the labour market service. Trained staff in the service of vocational rehabilitation is essential to ensure that people with MS can continue to work, often at reduced hours. Consequently, care must be taken to ensure that competent persons are responsible for assigning jobseekers and that the labour market service informs employers about MS in the future, as well as providing information on contact points for questions about disability or limitations to those affected. For this purpose, a central support office for disability and work restriction is necessary in the future, so that the labour market service can focus on maintaining employment. In addition, the labour market service should consult with companies and people with MS about possible work activities, which is why trainings for the labour market service would be necessary. In this context, companies could be offered a subsidy if they employ chronically ill people (less than 50% disabled).	-Training for staff at agencies to facilitate reintegration into the workplace and find new job opportunities -Providing a central support office for disability and work restriction

The group of people with MS differed according to the following criteria: Gender, age, place of residence, industry, level of education, work activity, age at diagnosis, currently working, under medical care (medication), progression of symptoms/disease, years of work already completed, etc. The main criterion was that the participant is working or was working in order to be able to give a realistic assessment of the work situation for people with MS.

2.1 Data collection and recruitment

It was possible to identify 43 experts from various institutes who were contacted several times by telephone and in writing. Eight of these experts did not participate in the study due to their lack of knowledge about support programmes for people with MS. No feedback was received from 21 experts despite repeated contact. In the end, 14 experts could be recruited to answer the study questions, although four of them could not or did not want to make any statements on the topic blocks. With ten experts participating in the study, the intended diversity could be guaranteed.

Participants for the study were people with MS who were invited to participate via a social media platform. 42 people with MS volunteered to participate in the study. After analysing the demographic data, 20 participants were selected for the study and contacted through telephone interviews.

2.2 Data analysis

The studies were evaluated by means of a qualitative content analysis according to Mayring (2014), whereby the form of a summary content analysis was appropriate (Mayring & Fenzl, 2014). With the help of the data analysis platform MAXQDA, the data from the two studies could be compared with each other and the central results of the surveys could be worked out. Each interview was conducted by the same researcher. In order to guarantee consistency, all data were coded and analysed by the main author (Green, 2007). Individual participants’ data were anonymised to maintain confidentiality.

2.3 Overview of the participants

The following anonymous 10 experts from the health and social sectors who are working with people with MS participated in the study. Attention was paid to a broad diversity of disciplines:

Department of a Ministry

Federal States Self-Help Group A

Federal States Self-Help Group B

Local Branch of Chamber of Labour A

Local Branch of Pension Insurance Institution A

Nursing Centre A

Physiotherapist with Focus on MS

Rehabilitation Centre A

Multiple Sclerosis Association

Multiple Sclerosis Centre

A broad diversity was also aimed for among the 20 MS patients participating. The subjects were 70% female and 30% male and they were between 20 and 60 years old. The decisive inclusion criterion was that the test persons were working or had been working at some point in their lives. The illness-related symptoms were assessed by 40% of the test persons as mild, 20% as moderate and 40% as severe.

3 Results

After the evaluation of the data, the results of the two-stage study could be compared with each other. It was focused on the support measures for maintaining the ability to work of people with MS provided by the state of Austria. In the course of the study, the most important improvement measures for the participants were analysed. On the one hand, the focus was placed on the optimisation of already existing support measures. On the other hand, the desire was expressed for further measures to offer additional support to MS patients. The following three central results could be worked out and supported with suggestions for improvement from the study participants, who compromise 10 experts from the health and social sector and 20 people who suffer from MS:

4 Discussion

Through this two-stage study, several approaches to improving and further developing governmental support measures to maintain the ability of people with MS to work were obtained: (a) Less stringent conditions for the approval of state assistance. (b) Centralisation of facilities for the disabled by municipalities. (c) Disability support should be transferred to the competence of the federal government. (d) Focussed allocation to rehabilitation programmes and higher use of occupational therapies. (e) Financial support for rehabilitation and individual therapies by policy makers. (f) Offering outpatient rehabilitation, which is possible in parallel to work and family. (g) Examination of the German system of “partial pension” for implementation in Austria. (h) Creation of a central counselling service, which is available to people with MS for any questions. (i) Implementation of the system of specialist nurses for MS as the first MS contact person instead of or in addition to MS physicians to assist in providing information and support after a diagnosis and with questions about work activities and care. (j) Intensive cooperation between health care providers, labour market services and companies to offer suitable new job opportunities. (k) Trainings for staff of the service of vocational rehabilitation in order to help save one’s ability to work.

Some of the study findings are in agreement with results from previous international studies: (1) With regard to the importance of expanding publicly fully funded MS-specific therapy and neuropsychological offers in all regions, these study results are in line with the approach already explored in 2005 by O’Connor et al. (O’Connor, Cano, Thompson, & Playford, 2005). (2) The creation of a central counselling service would enable people with MS to be informed about existing support measures and realise its potential, as has already been studied by Roessler et al. (2014) in the course of the use of rehabilitation counsellors (Roessler, Rumrill, & Fitzgerald, 2004). (3) Another international approach of Townsend (2008) to train specialist nurses specifically for MS as the first MS contact person instead of or in addition to MS physicians was discussed within this study. Specialised nurses could assist in providing information and support after an MS diagnosis and with questions about work activities and care (Townsend, 2008). (4) As stated in this study, the labour market service has to work closer with companies in order to offer further training opportunities on the one hand and suitable new job opportunities on the other to draw success from vocational rehabilitation. This is in line with the findings of O’Connor et al. (2005), who recognised that people with MS need both health care and vocational rehabilitation services to remain employable. In this context, O’Connor et al. (2005) have already analysed policy makers who are increasingly promoting rehabilitation programmes that link health care providers and employment agencies (O’Connor, Cano, Thompson, & Playford, 2005).

5 Conclusion

A combination of the governmental support measures available so far with the proposed optimisations or additions by MS patients and experts can lead to a significant reduction in disease-specific absences and limitations, which in turn results in the preservation of the ability to work.

Besides less stringent conditions for the approval of state assistance, the participants spoke out in favour of a centralisation of facilities for the disabled, as well as the transfer of disability support to the competence of the federal government. To support people at every stage of their disease, the creation of a central counselling service, which is available to people with MS for any questions, is needed. An additional approach for this topic is the implementation of the system of specialist nurses for MS as the first MS contact person instead of or in addition to MS physicians to assist in providing information and support after a diagnosis and with questions about work activities and care.

Another important point for maintaining the ability to work was the focussed allocation to rehabilitation programmes and financial support for rehabilitation and individual therapies. Both a higher use of occupational therapies and offering of outpatient rehabilitation can increase the usage of health-promoting exercise sessions by MS patients. In addition, the experts and MS patients agreed that, on the one hand, intensive cooperation between health care providers, labour market services and companies to offer suitable new job opportunities, as well as specific trainings for staff of the service of vocational rehabilitation represent a benefit for MS patients. Subsequently, an examination of the German system of “partial pension” for implementation in Austria was discussed, which, just like all the other suggestions from the interviews, needs to be explored further.

In summary, it is assumed that a combination of the governmental support measures available so far with the proposed optimisations or additions by MS patients and experts can lead to a significant reduction in disease-specific absences and limitations, which in turn results in the preservation of the ability to work. The proposed approaches in this study need further research to enable implementation.