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Missing Pieces: Missing too much to be meaningful

on July 28, 2017

missing pieces

While I hate to decry any research connected to multiple sclerosis, I feel that this is one of those times. I cannot stay quiet.

A new report says 25% people with MS in the UK don’t know about treatments that may help delay disability. And that’s despite most of them saying disability is their big concern.

But, although the report talks about massive percentages backing up supposed `facts’, those figures gloss over a big problem. The size of the research sample is pathetic.

The MS Society estimates there are 107,000 people with MS in the UK, but the sample size was just 100. Absolutely ridiculous. Additionally, the researchers also surveyed 120 neurologists.

According to CheckMarket, a leading cloud-based survey software solution with more than 10,000 users in 150 countries, the sample size needed to be nearly 2,350.

Apparently, the report was funded by Sanofi Genzyme and conducted by Adelphi Research UK. It is titled The Missing Pieces though, as far as I can see, the main thing missing was a big enough sample.

Only 100 people gave their views, so any percentage given cannot be scaled up to purportedly represent the views of 107,000 people.

It is a great shame really, as the research results would be worth considering if the sample was large enough and was truly representative. But it was neither. Also, online questionnaires are not the best way to obtain a representative sample.

‘Missing Pieces’ misses target

The organizers claim that The Missing Pieces campaign aims to explore attitudes and behaviors around MS treatment in the UK, and to identify gaps in knowledge, understanding, conversations, and treatment/care plans.

Sad to say, because they didn’t plan well enough, their efforts have failed to reach that aim in any meaningful way.

Bearing in mind my warning that the views of 100 people are unlikely to be meaningful, here are its major findings:

  • Around three-quarters of healthcare practitioner think MS patients face delays in beginning DMTs. They blame poor access to neurologists with MS specialities. This is despite the fact that disability prevention is a key goal of the country’s National Health Service. An MS neurologist is needed to start a patient on such treatment
  • 45% of patients said their primary healthcare specialist was an MS nurse. And 20% reported turning most to general practitioners
  • Among all patients surveyed, 36% said they had not seen a neurologist in the past 12 months
  • 50% of patients said they discussed disability with a doctor or nurse at the time of diagnosis. Yet only 34% reported having continuous conversations on disability during subsequent visits
  • 69% of healthcare practitioners reported “routinely discussing” disability with patients around the time of diagnosis
  • Among patients, only 22% reported discussing treatment goals with a healthcare practitioner
  • 45% of patients said they were “scared” they would be disabled

Sanofi Genzyme is the specialty care unit of Sanofi. It markets Lemtrada (alemtuzumab), and Aubagio (teriflunomide), both for use by people with relapsing-remitting MS.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.


2 Responses to “Missing Pieces: Missing too much to be meaningful”

  1. Ed Tobias says:

    Your points are well taken, Ian.

    I recently wrote about this same report in my “MS Wire” where I noted that “About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany.”

    The EMSP should, I think, be considered a reliable source of information about MS in the Europe and its facts seem to be similar to those in the “Missing Pieces” report.

    The “Missing Pieces” report also seems to mirror much of what I(and I’m sure you)see MS patients complaining about on various social media platforms.

    Even as small as this survey is, it should serve to encourage discussion about access to MS care. That wouldn’t be a bad thing, would it?

    • ian0811 says:

      Hi Ed, thanks for replying. I take your points about EMSP. Yes, from personal experience, some of the findings resound with me. But none of that makes the Sanofi study, using such a ridiculously small sample, representative. That be as it may, I agree that the more the issues are discussed, the better it should be.

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