Quarter of MS Patients in UK Not Aware of Disease-modifying Treatments, Online Survey Reports

Patricia Silva, PhD avatar

by Patricia Silva, PhD |

Share this article:

Share article via email
anxiety and irritability

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.

TheĀ report, fundedĀ byĀ Sanofi Genzyme,Ā was conducted by Adelphi Research UK via online questionnaires given 100 healthcare specialists, includingĀ neurologists,Ā and 120 patients with all types of multiple sclerosis inĀ 2016. Called ā€œThe Missing Pieces,ā€ it reportsĀ that 83 percent of relapsing-remitting MS patients ranked preventing progression and disability as their primary concern.Ā Ā However, 24 percent of thoseĀ 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), potentiallyĀ 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 asĀ those with secondary progressive and primary progressive MS.

ā€œItĀ  isĀ  essentialĀ  thatĀ  treatmentsĀ  are considered inĀ  aĀ  timelyĀ  mannerĀ  toĀ  increaseĀ  theĀ  likelihoodĀ  of preventingĀ  long-termĀ  disabilityĀ  andĀ  ultimatelyĀ  toĀ  decreaseĀ  theĀ  chanceĀ  ofĀ  MSĀ  impactingĀ  day-to-day quality of life,ā€ Emma Matthews, MS Nurse Specialist at Northampton General Hospital, said in a release published by SanofiĀ on a company website.

ā€œThe UK MS community needs to create the right infrastructure to allow for earlier and effective conversations about treatment and disability,ā€ Matthews added.

Specific to the United Kingdom,Ā ā€œThe Missing Piecesā€ campaign aimsĀ 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-quartersĀ of healthcareĀ practitioner think MS patients face delays in beginning DMTs because ofĀ 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 generalĀ practitioners
  • Among all patients surveyed, 36 percent said they hadĀ not seen a neurologist in the past 12 months
  • 50 percent of patients reported discussing disability with aĀ doctor or nurse at the time they were diagnosed, butĀ only 34 percentĀ 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 aĀ healthcareĀ practitioner
  • 45 percent of patients said they were “scared” of becoming disabled

ā€œIt wasnā€™t until a couple of years after my diagnosis that I even knew that there was such a thing as a specialist MS neurologist,ā€ Trishna Bharadia, an MS patient and activist, said in the report. ā€œThis upset me because Iā€™d have liked to have had the choice from the point of diagnosis to transfer to a specialist MS centre if Iā€™d wanted to.ā€

Ā Lack of access to MS neurologists was the leadingĀ reason given by healthcare professionals for the delay in DMTs being initiated in patients. AĀ lack of specialized healthcare facilities, necessary to deliver this type of treatment, ranked second among reasons for such delays, identified by 62 percent of MS specialist nurses and 47 percent of MS specialist physicians.

A main reason for not discussing disability, healthcare practitioners said,Ā 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.

ā€œThis report underlines the need to challenge our thinking around treatment goals and endpoints,ā€said PeterĀ  Kuiper,Ā  SanofiĀ  Genzyme’sĀ generalĀ  manager for the U.K. and Ā Ireland. ā€œIf maintaining theirĀ  abilityĀ  toĀ  liveĀ  theirĀ  dailyĀ  livesĀ  asĀ  normallyĀ  asĀ  possibleĀ  isĀ  whatā€™sĀ  mostĀ  importantĀ  toĀ  peopleĀ  with MS,Ā  thenĀ  we aim to relookĀ  atĀ  howĀ  theĀ  MS communityĀ  canĀ  betterĀ  discuss,Ā  assessĀ  andĀ  measure disability so we can help ensure the true needs of people with MS are met.ā€

Sanofi Genzyme, the specialty care unit of Sanofi, markets LemtradaĀ (alemtuzumab), an infusion treatment, and AubagioĀ (teriflunomide), an oral therapy, both for use by people with relapsing-remitting MS.