Sanofi and its specialty care global business unit, Sanofi Genzyme, has published a report—The Missing Pieces, showing that the vast majority (74%) of UK multiple sclerosis (MS) healthcare professionals who completed a survey believe that people with MS face delays in starting on disease modifying treatments (DMTs). DMTs have been shown to not only reduce the rate of relapses, or “attacks” in MS, but also slow down the rate of disability progression. In the UK only 21% of people with MS receive a DMT, one of the lowest rates in Europe.
“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,” says Emma Matthews, MS Nurse Specialist, Northampton General Hospital, UK. “The UK MS community needs to create the right infrastructure to allow for earlier and effective conversations about treatment and disability.”
Peter Kuiper, General Manager UK & Ireland at Sanofi Genzyme adds: “This report underlines the need to challenge our thinking around treatment goals and endpoints. 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.”
The report also shows that despite 83% of people with MS surveyed stating that what matters most to them is “taking action to prevent disease progression and potential disability”, one in four (24%) reported being unaware that treatments could help delay the onset of life-impacting disability. Only 50% of people with MS say disability was discussed at diagnosis stage, and on an on-going basis the “disability conversation” only occurs in a third (34%) of appointments.
The Missing Pieces Report combines qualitative and quantitative research with both healthcare professionals and people with MS across the UK. Its purpose was to explore attitudes and behaviours around the treatment of MS in the UK with the aim of identifying the gaps in knowledge, understanding, conversations and treatment/care plans.
A lack of access to neurologists who specialise in MS was the primary reason given by healthcare professionals for the delay in DMTs being initiated. Sixty-two per cent of MS specialist nurses and 47% of MS specialists also felt that this delayed initiation is due to a “lack of healthcare facilities needed to deliver DMTs”.
Every person with MS experiences disease progression and symptoms differently, sometimes making it difficult for healthcare teams to manage. As to why conversations are not happening regarding disability, several reasons came to light; the main one being that there is a discomfort or stigma attached to discussing it. Half of the healthcare professionals believe there is a reluctance to talk to patients about the prospect of disability due to “not wanting to make them feel uncomfortable”.
The Missing Pieces project is the Sanofi Genzyme UK response to issues identified by the organisation’s global vs.MS initiative which is focused on highlighting and addressing the sometimes-debilitating symptoms that accompany MS, as well as their daily impact on people living with and affected by the condition. In the UK the focus will be working with the MS community to help ensure that earlier and effective conversations are being had around care, disability and treatment. And to ensure they receive a standard of care that matches that of other European countries.
The Missing Pieces research data were collected between July and October 2016 via online questionnaires with 100 UK MS specialist healthcare professionals and with 120 people with MS. Respondents were from England (85%), Scotland (7%), Wales (7%) and Northern Ireland (1%).