Survey Illuminates Need to Provide Multiple Sclerosis Patients More Information

In the age of booming media, it can be difficult to know or be confident that you are receiving correct information. When it comes to your healthcare or the care of a loved one, this can be terrifying.

A recent survey has found that the majority of multiple sclerosis (MS) patients receive most of their information regarding therapies from the internet or the TV. Although these individuals know this information isn’t reliable, they don’t know where to turn and there’s no one helping to guide them.

This survey specifically analyzed MS patient’s knowledge of autologous hematopoietic stem cell transplants (aHSCT) as a potential treatment option.

The results from this survey were published in Multiple Sclerosis and Related Disorders.

About aHSCT

aHSCT involves the collection of a patient’s healthy stem cells from the bone marrow, immunobulation, and then the infusion of the cells back into the body. The goal is to essentially create a new immune system in the body that doesn’t attack the myelin.

Researchers are hopeful about this therapy for MS but it hasn’t yet been studied in a randomized and controlled trial. That means it can’t yet be recommended as a therapeutic option.

However, that doesn’t mean that word hasn’t spread among patients about this therapy and more and more MS patients are asking questions about aHSCT.

Unfortunately, some have unrealistic expectations of this treatment.

The Survey

The survey was conducted by a group of researchers located in the Netherlands. They wanted to understand the expectations patients hold about this treatment and where they are getting the information they use to develop these perceptions.

It included 137 MS patients who had a medium age of 41. All patients were receiving treatment at Amsterdam University Medical Center. All of the participants were given a questionnaire containing 44 questions. 92% of the respondents had a MS diagnosis while 5% were diagnosed with clinically isolated syndrome or multiple sclerosis on a second opinion. Unfortunately, data was not available for 3% of the patients.

Of all of the respondents, 66% were currently receiving disease-modifying therapy.

The findings are as follows:

  • 83% had heard of aHSCT
  • 25% felt they had a sufficient amount of knowledge of aHSCT
  • 0% believed they had excellent knowledge of aHSCT
  • 79% thought the therapy could stop the progression of disability
  • 46% of patients believed that it would lessen their disability
  • 50% thought that the therapy would be more effective than DMTs
  • 52% believed aHSCT would result in worse side effects than DMTs
  • 33% think that there is not enough knowledge about the side effects of aHSCT
  • 45% were able to name a side effect of the therapy
  • 19% wanted to undergo an aHSCT
  • 54% would consider aHSCT in the future. This response was more prevalent for those who had great disability, received their diagnosis within the last 10 years, or were dissatisfied with the treatment they were currently on
  • 18% of respondents were dissatisfied with their current therapeutic regime
  • 15% believed that what they witness on the television and on the internet about aHSCT is reliable information
  • 80% felt that the information given to them by their neurologist can be trusted the most
  • 58% believed that information from an experienced expert is the second best source of knowledge
  • 49% labeled scientific literature as the third most trustworthy source

What it all means

Ultimately, these results show that despite the fact that MS patients generally have positive feelings toward aHSCT, a dangerous amount of information has not been provided to them.

In order for patients to make informed decisions about their healthcare, paramount knowledge and resources are needed.   

An easy reform can be provided by neurologists by specifically addressing aHSCT, its benefits, and its risks to their patients. The therapy should be discussed in direct comparison to other therapies. This will ensure that MS patients are receiving quality information from a reliable source and are not being potentially swayed in their medical decisions by those who may have commercial interests in their healthcare.

The medical field takes a village, but we have to be cognizant of the problem in order to make positive reforms.

You can read more about this survey here.

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