|Prof Helmut Butzkueven|
A Monash University academic neurologist has joined forces with other global experts in multiple sclerosis (MS) research and treatment to create – for the first time – a consensus for measurable standards of MS care.
The standards could have a profound effect on people with MS by improving care and by reducing the time it takes to diagnose and treat the chronic neurological disease – vital to preserving tissue in the central nervous system (CNS) and to maximising lifelong brain health.
Professor Helmut Butzkueven, from the Central Clinical School’s Department of Neuroscience, and nurse practitioner Jodi Haartsen (Adjunct Eastern Health Clinical School), are on the International MS Brain Health Initiative steering committee, a UK-based multidisciplinary group led by Professor Gavin Giovannoni and endorsed by more than 50 professional associations and advocacy groups globally.
The group has just published a paper in the Multiple Sclerosis Journal endorsing a management strategy it hopes will eventually be adopted worldwide.
The strategy aims to develop internationally applicable quality standards for timely MS care and for regular proactive monitoring of treatment effectiveness and disease activity. The Initiative, which has promoted a platform of maximising health and wellbeing outcomes for several years, stresses that “time matters”.
Irreversible neural damage and cell loss occur from disease onset when the frequency of inflammatory attacks on the CNS is often greatest. Left untreated, symptoms typically worsen and become irreversible. The chronic disease can cause problems with vision, balance, muscle control, and other basic body functions.
However, MS management in terms of specialist care and available medication is very variable in different parts of the world.
“In Australia we have highly disparate health care – if you live in Melbourne or Sydney and live with MS you’re vastly luckier than if you live in Launceston where there is currently no neurologist,” Professor Butzkueven said.
“Even in a lot of places where there are specialists and medications are available, people are not always managed optimally,” he said.
“We have clinics that look after 2000 people with MS here at The Alfred and at Eastern Health and we see what a difference the application of relatively simple plans for managing people makes in terms of outcomes.
“We want everyone in Australia to have the same access,” he said.
The group used what’s called the Delphi process of consensus to arrive at ‘core’, ‘achievable’ and ‘aspirational’ time-frames reflecting minimum, good and high care standards, respectively. This covers the spectrum of treatment starting with the time taken for a newly diagnosed MS individual to be seen by a specialist.
It is aiming for a small number of measurable standards at first.
“It’s achievable if you have three to five items. It might be that we gradually refine the standards so that eventually we have a ‘recipe book’ of 20 to 30 standards,” Professor Butzkueven said.
Establishing measurable standards would also be an ideal tool for long-term research and to demonstrate the benefits of good MS care, he said.
“If we can show that the right medication for the right person at the right time actually improves outcomes, some of those health-care systems are going to look at that differently. It’s the concept of value-based medicine.
“If we can increase someone’s working life by 10 years or reduce their likelihood of being wheelchair-bound or dependent on others for care then you show that it’s money well-spent, apart from the benefits to the person with MS.”
A pilot study will be conducted in the first six months of next year.
Professor Butzkueven leads the Monash-based not-for-profit MSBase Foundation which manages the web-based MSBase Neuroimmunology Registry. This shares, tracks and evaluates data globally in MS and other CNS demyelinating diseases.
To read the paper
Hobart J, Bowen A, Pepper G, Crofts H, Eberhard L, Berger T, Boyko A, Boz C, Butzkueven H, Celius EG, Drulovic J, Flores J, Horáková D, Lebrun-Frénay C, Marrie RA, Overell J, Piehl F, Rasmussen PV, Sá MJ, Sîrbu CA, Skromne E, Torkildsen Ø, van Pesch V, Vollmer T, Zakaria M, Ziemssen T, Giovannoni G. International consensus on quality standards for brain health-focused care in multiple sclerosis. Mult Scler. 2018 Nov 1:1352458518809326. doi: 10.1177/1352458518809326.
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