MS Australia report highlights need for faster diagnosis of MS
More funding, education, awareness of symptoms needed
MS Australia released a report highlighting the critical need for faster multiple sclerosis (MS) diagnoses.
While diagnostic delays have shortened in recent years, MS patients still wait an average of almost four years from the onset of first symptoms to a formal diagnosis, the organization said in the ‘My Diagnosis’ report, released in recognition of World MS Day on May 30. Diagnosis is the theme of this year’s awareness day, which launches a two-year campaign advocating for early and accurate MS diagnosis.
“Investing in MS research and building greater awareness among [general practitioners] and the general public of the condition will propel us towards a future where MS is detected earlier, and a future where its impact is significantly mitigated,” Rohan Greenland, CEO of MS Australia, said in a press release from the organization.
It’s well recognized that starting disease-modifying treatments as early as possible leads to better health outcomes for MS patients, slowing or even halting neurodegeneration and the disability that accompanies it.
An early start to treatment depends on a prompt and accurate diagnosis. However, the first symptoms of MS can be quite general, and there is not one specific diagnostic test for the condition. Those factors, combined with a lack of awareness about the neurodegenerative disease, mean that patients commonly experience substantial delays between the time they first experience symptoms and when they’re formally diagnosed.
‘Time is brain’
Meanwhile, the disease continues to cause damage the brain and spinal cord, leading to disability progression that’s unlikely to be reversed with current treatments.
“In MS, time is brain,” said Julia Morahan, PhD, head of research at MS Australia. “We know that the longer it takes to get a diagnosis of MS, the greater the risk of damage occurring and disability accumulating, which can ultimately diminish a person’s quality of life.”
For the report, researchers at the University of Tasmania looked at trends in MS diagnoses over the last 25 years, starting around the time that the first disease-modifying therapies for MS became available in 1996.
They leveraged data from the Australian MS Longitudinal Study (AMSLS), which has been collecting patient-reported outcomes from MS patients since 2002, with responses from around 2,500 patients every year.
From 1997 to 2000, the average time to diagnosis from symptom onset was almost five years and four months, and the median was two years. This diagnostic delay significantly shortened to an average of three years and 11 months, with a median of one year, in the 2017-2021 period.
While the change is promising, the researchers said, many patients still wait too long to be diagnosed, delaying their access to critical medications.
The report outlines steps to prevent diagnostic delays, including raising more funds to support research into disease detection methods able to capture the condition in the so-called prodromal period, in which subtle signs of disease emerge sometimes years before typical MS symptoms.
“Greater research investment will support efforts to uncover more accurate biomarkers that are specific to MS,” said Vilija Jokubaitis, PhD, an assistant professor at Monash University.
Improved education and awareness of MS among healthcare professionals, and educating the general community about the early signs of MS will also be critical to closing the diagnostic gap, MS Australia said.
“Given MS affects about one in seven hundred Australians, many [general practitioners] are unlikely to see people with MS depending on where they practice,” Jokubaitis said. “So if a person comes to them with those symptoms, it may not be the first thing they think of if the awareness isn’t there.”
The report includes stories from MS patients describing their diagnostic journeys, some of which took several years.
“Waiting for a diagnosis had an enormous impact on me emotionally, my ability to focus and my ability to work,” said MS patient Laura Birchall, who believes she had symptoms for years but didn’t pay close attention to them.
“I think if something feels a little bit off, even if it’s not stopping you from doing your day-to-day activities. If there’s been a change, if something doesn’t feel right, talk to people in your life about it, and listen to them when they tell you to go to the doctor,” Birchall said.
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