Jobs. Employment. Making a living.

These are all phrases which (quite rightly) make most people break out into a sweat. The act of searching, applying, and interviewing for a job can be an exhausting, confusing process. When you have a neuromuscular condition, the process only becomes more complicated. How do you know your work will understand your condition? Will there be accommodations? What if you need time off for illness or attending hospital appointments?

Ideas like these may be on the minds of Dr Marie Antoinette Minis and her colleagues, who conducted a study titled ‘Exploring Employment in Consultation Reports of Patients with Neuromuscular Diseases.’ The aim of this study was to look at a large number of reports made by medical professionals (specifically occupational, physical, and speech therapists), and see what people with neuromuscular conditions said about their work lives. There were 102 reports in total, all from patients with a neuromuscular condition visiting the Neuromuscular Centre Nijmegen in the Netherlands. Of those reports, 80% mentioned employment! However, sifting through so many reports is a huge task, which is why Dr Minis and her colleagues created a questionnaire to sort the information. This questionnaire asked about the type of person with a neuromuscular condition in the report (age, sex, education, diagnosis, etc.); whether or not they were employed; how much money they made, and how often they work/take sick leave. 

Once they were made anonymous, Dr Minis and her colleagues examined the reports to identify a number of recurring problems people with neuromuscular conditions face when it comes to employment. They also looked at recommendations from different medical professionals regarding support, treatment, and referrals which could aid in gaining or maintaining employment. The team found 86 reports to be eligible for analysis, and in those reports, 37 patients (43%) were employed, and 49 patients (57%) were unemployed. In general, the employed patients tended to be male, younger, and have progressed to higher education. Interestingly, the gap between those who were and weren’t employed was large: more than half of those employed worked between 21 and 40 hours a week! By contrast, the unemployed individuals varied between being on a disability pension, wanting to return to work, and having no information available. 

Most of the employed people were employed in office jobs, whilst some were in ‘moderately strenuous’ jobs (positions which require some movement/lifting/etc.), and a small amount were in labour-intensive jobs (jobs which require a great deal of movement/lifting/etc.). Although the majority of those employed had one or more adaptations to help them at work, many reported work-related problems. Answers varied regarding how these problems have been addressed: for some, employment problems had been solved without any referrals, whilst others were referred to an occupational therapist or other health professional.

When looking at their findings as a whole, Dr Minis and her colleagues discovered that the amount of people with neuromuscular conditions who are employed was less than a previous study: 43% this time versus an earlier 61%. Patients largely reported that problems with employment were well-addressed by occupational and physical therapists, indicating that they are better-positioned than speech therapists to aid those working with a neuromuscular condition. In general, the occupational therapy sections of the reports had the most information on employment, followed by physical and then speech therapists. This makes sense, given that work is an important component of occupational therapy. Most reports mentioned the need for adaptations in the workplace, including improvements to working conditions, terms of employment, and the content of tasks the employee needs to carry out. 

So what does this report tell us? Well, we know that a significant number of people with neuromuscular conditions both want to be, and are, employed. However, a good chunk of those people are working in jobs which neuromuscular conditions make difficult, particularly those involving heavy lifting. This report indicates the value of occupational therapists, who hold the key to improving working conditions for people with neuromuscular conditions by taking on most of patients’ information about employment, and offering accommodations and referrals. By highlighting the importance of occupational therapists’ role in the wellbeing of neuromuscular condition-having employees, we can aim to support OTs with further research and guidance. In the long-term, this may increase employee retention and satisfaction in the workplace, and help improve both financial situations and quality of life for people with neuromuscular conditions.

Written by Quinn Clark

Sources Cited:

Minis MA, Cup EH, Heerkens YF, Engels JA, van Engelen BG, Oostendorp RA. Exploring employment in consultation reports of patients with neuromuscular diseases. Arch Phys Med Rehabil. 2012 Dec;93(12):2276-80. doi: 10.1016/j.apmr.2012.04.016. Epub 2012 Apr 27. PMID: 22543016.