A recent patient survey reveals that almost one in four people with multiple sclerosis in the U.K. are not aware of available treatments that could help delay the onset of disability, even though a clear majority put disability as a chief worry.
The report, funded by Sanofi Genzyme, was conducted by Adelphi Research UK via online questionnaires given 100 healthcare specialists, including neurologists, and 120 patients with all types of multiple sclerosis in 2016. Called “The Missing Pieces,” it reports that 83 percent of relapsing-remitting MS patients ranked preventing progression and disability as their primary concern. However, 24 percent of those who took part in the survey reported not being aware of treatments that might work to delay MS onset and progressive loss of function.
Only 21 percent of MS patients said they were actually receiving disease-modifying treatments (DMTs), potentially one of the lowest rates in Europe.
Respondents were from England (85 percent), Scotland (7 percent), Wales (7 percent), and Northern Ireland (1 percent), and included RRMS patients as well as those with secondary progressive and primary progressive MS.
“It is essential that treatments are considered in a timely manner to increase the likelihood of preventing long-term disability and ultimately to decrease the chance of MS impacting day-to-day quality of life,” Emma Matthews, MS Nurse Specialist at Northampton General Hospital, said in a release published by Sanofi on a company website.
“The UK MS community needs to create the right infrastructure to allow for earlier and effective conversations about treatment and disability,” Matthews added.
Specific to the United Kingdom, “The Missing Pieces” campaign aims to explore attitudes and behaviors around MS treatment in that country, and identify gaps in knowledge, understanding, conversations and treatment/care plans.
Among its major findings:
- Around three-quarters of healthcare practitioner think MS patients face delays in beginning DMTs because of poor access to neurologists with MS specialities, even though disability prevention is a stated key goal of the country’s National Health System. An MS neurologist is needed to start a patient on such treatment
- 45 percent of patients said their primary healthcare specialist was an MS nurse, and 20 percent reported turning most to general practitioners
- Among all patients surveyed, 36 percent said they had not seen a neurologist in the past 12 months
- 50 percent of patients reported discussing disability with a doctor or nurse at the time they were diagnosed, but only 34 percent reported having continuous conversations on disability during subsequent visits
- 69 percent of healthcare practitioners reported “routinely discussing” disability with patients around the time of diagnosis
- Among patients, only 22 percent reported discussing treatment goals with a healthcare practitioner
- 45 percent of patients said they were “scared” of becoming disabled
“It wasn’t until a couple of years after my diagnosis that I even knew that there was such a thing as a specialist MS neurologist,” Trishna Bharadia, an MS patient and activist, said in the report. “This upset me because I’d have liked to have had the choice from the point of diagnosis to transfer to a specialist MS centre if I’d wanted to.”
A main reason for not discussing disability, healthcare practitioners said, was feelings that such a conversation would not be “appropriate.” About half of MS practitioners, especially nurses, reported not wanting to make patients feel uncomfortable.
“This report underlines the need to challenge our thinking around treatment goals and endpoints,”said Peter Kuiper, Sanofi Genzyme’s general manager for the U.K. and Ireland. “If maintaining their ability to live their daily lives as normally as possible is what’s most important to people with MS, then we aim to relook at how the MS community can better discuss, assess and measure disability so we can help ensure the true needs of people with MS are met.”
Sanofi Genzyme, the specialty care unit of Sanofi, markets Lemtrada (alemtuzumab), an infusion treatment, and Aubagio (teriflunomide), an oral therapy, both for use by people with relapsing-remitting MS.