- Research funded by MS Research Australia led to development of the MS Work Difficulties Questionnaire, a tool designed to identify factors relating to a person’s ability to work.
- The short version of this questionnaire has now been adapted and translated into Spanish and Turkish by other research teams and validated as being an effective tool in these populations.
- The questionnaire has been found to be a valuable tool for health professionals working in employment and people with MS worldwide.
- Understanding how work difficulties affect different populations of people with MS will allow employment services to be tailored and enhanced for different settings.
MS is often referred to as a disease of young people, since it is usually diagnosed in someone’s 30s or 40s, at a time in their lives when they are building their careers and starting a family. People with MS often report that they have left the workforce or reduced their level of employment due to their symptoms. Employment is a hot topic in MS research, as lower employment has been linked to lower quality of life and can have a long-term impact.
We recently reported that the employment outlook for people with MS in Australia is improving and this has been brought about by an increased focus on employment support for people with MS and through access to higher efficacy MS medications.
However, symptoms alone do not explain the lower employment rates of people with MS. In 2009, Dr Rhonda Brown from the University of New England and Dr Cynthia Honan, from the University of Tasmania were awarded a project grant from MS Research Australia looking at work difficulties in MS. This research led to the development of the MS Work Difficulties Questionnaire (MSWDQ), a 50 item survey to accurately measure work difficulties as experienced specifically by people with MS. The survey covers three aspects that may affect a person’s ability to work: physical factors; psychological or cognitive factors (such as memory and concentration); and external barriers (such as financial concerns and home/work balance). In 2014, a shorter version of the questionnaire known as MSWDQ-23 was developed that retained the robustness of the original but was able to be administered more quickly and easily.
In a great example of Australian research going global, the short version questionnaire has now been translated, adapted and tested in other MS settings, including Spain and Turkey. The Spanish team first undertook a cultural adaption of the questionnaire to ensure the Spanish version remained relevant and then validated the questionnaire in Spanish people with MS. In Turkey, the short questionnaire was translated and validated and found to be highly reliable in assessing difficulties faced by Turkish people with MS in the workforce.
Understanding work-related problems in different settings is crucial to enhance the ability of people with MS to maintain employment. A strength of the questionnaire is that it covers current employment situations and people’s expectations about future work outcomes. When it was used in Australians with MS, the questionnaire uncovered differences in people’s perceptions of work difficulties they may face in the future as compared to current work outcomes. In particular, people with MS thought external factors such as financial concerns or work-life balance would be more important than they turned out to be. And while people thought that physical, psychological and cognitive difficulties would impact on how their work would change in the future, only physical symptoms ended up being associated with changes to work when assessed by the questionnaire.
With the new versions of the questionnaire, it will be interesting to see whether these findings are also seen in other populations of people with MS.
This type of information is hugely important to inform how work difficulties in people with MS should be addressed and solutions tailored to people in different settings. Understanding people’s perception of difficulties in the workplace will enhance the development and delivery of employment services to people with MS worldwide. This a wonderful example of how MS research funded and conducted in Australia can benefit people with MS regardless of where they live.