World-first trial to help people with MS adjust socially and emotionally

Researchers at the Brain and Mind Centre at the University of Sydney are investigating the benefit of psychological support, which will help people living in with MS in the Sydney Local Health District adjust emotionally and socially to the chronic condition.

The 10-week trial named Combat MS focuses on improving psychological well being, with computer-based training programs helping to address cognitive difficulties, such as improving memory, attention span and speed of thinking.

“Most patients adjust to how the disease can affect them physically. But we recognise that there is a lack of services for people with MS to help them to cognitive and psychological issues,” Royal Prince Alfred Hospital (RPA) consultant neurologist, Professor Michael Barnett says.

Clinical neuropsychology registrar Caitlyn Dawes says cognitive behavioural therapy (CBT) techniques help patients identify and change unhelpful or negative ways of thinking and behaving.

“Some people think they are a burden on their family and friends and withdraw from activities … but when they talk to family and friends they find that’s not the case.”

Neuropsychologist Dr Keri Diamond also notes that majority of people diagnosed with MS are aged between 20-40.

“This is the prime of people’s lives – when they are studying, working, having children. There is little support out there for them. So, what sometimes ends up happening is that they withdraw from activities, they stop working and stop seeing friends, when in actual fact this doesn’t have to be the case.”

The trial is funded by pharmaceutical company, Novartis, despite the trial having nothing to do with the drug.

“They [Novartis] recognise that there’s a problem as to the provision of services for people with MS. All of the big companies realise that corporate citizenship is what determines their perception [in the community],” Professor Barnett says.

The RPA MS Clinic has received a positive response from the 1000 patients involved, with the patients meeting weekly for 2.5 hour group sessions and forging new support networks.

Professor Barnett hopes the trial will display comprehensive evidence supporting the holistic approach and its durability.

National Policy Officer at Multiple Sclerosis Australia, Andrew Giles, says there are a number of MS organisations providing services and support in each state and territory across Australia but more support is required for the unpredictable disease.

“There could always be more psychological support for people living with MS,” he says.

“The neuropsychological symptoms experienced by people living with MS, which the Combat MS trial is reported to be seeking to address, may differ considerably in each person.”

MS Connect is one support service helping people with MS in Sydney understand a recent diagnosis, treatment options, learn practical ways to manage their symptoms and make healthy choices for living well with MS, with the help of neurologists, health professionals and service providers within the local community.

The service also focuses on providing psychological support by connecting patients to peer support groups and social work advisors for continued guidance and support.

Mr Giles says trials such as Combat MS are “very important.”

“Whilst we are yet to see the results of the trial, we can imagine that the results of the trial will help the broader MS community, their carers, families and friends.”

“Our state service provider organisations already have well-established mechanisms for seeking feedback from the MS community regarding the quality, level and range of services and support they provide and these trial results will also be useful in providing a further evidence base for tailoring services, advice and support for the MS community.”

He says it is essential for people with MS to access psychological support from the point of diagnosis.

“All too often, people diagnosed with MS wait until their symptoms worsen or experience a serious exacerbation or crisis before a psychological intervention is made.”

With the demand for more psychological support for Australia’s MS community, Mr Giles welcomes more trials such as Combat MS across the nation.

“Social and applied research of this kind can also help identify the kinds of services and support that are needed in the various geographic and socio-economic settings across the country,” he says.

“It is also important that trials of this kind are held not just in the capital cities but extend to involving people with MS living in regional, rural and remote settings.”