Research Summary: Understanding treatment decisions from the perspective of people with relapsing remitting multiple sclerosis: A critical interpretive synthesis

The past decade has seen a number of new treatment options become available for people living with relapsing remitting multiple sclerosis (RRMS).  While this increased choice is obviously fantastic for improving the chances of finding an effective and appropriate therapy, it does lead to a more complicated decision making process.

A lot of studies have been done to try and understand the key factors that influence this process.  Put more simply, what things do people living with RRMS feel are important when deciding what treatment option is the best for them?  

A recent review has combined all of this literature and outlined the main points that consistently appear.  We’ve summarised these below.  As always, we’d love your feedback – do you agree with these points?  Are there other aspects that you considered as part of this process that aren’t mentioned?  You can comment below this article, below the link on our Facebook page or tweet us at @MStranslate.

The authors of the review highlighted the following points as being critical to how people with RRMS made their treatment decisions:

1)  The unpredictability of multiple sclerosis meant that many people said their decision was based on their current life situation and immediate future plans, rather than anything too far into the future.

2)  Other lifestyle factors were also noted as being important.  One of the major points was regarding family planning and whether having children was something that was important in the short-term.  As well as that, the employment status of the person was also taken into account – both in terms of what would best allow them to keep working effectively and also what would be the least disruptive (especially in cases where the diagnosis was not disclosed to their employer).  

3)  It was also seen that often the decision was largely influenced by the advice of people around them, in particular, the opinions of both the neurologist and other people living with RRMS.  Often these come from very different viewpoints.  The reviewers concluded that neurologists will largely base their advice on known clinical data and safety profiles, whereas other people living with multiple sclerosis will base it more on their lived experiences.  For the second option in particular, people are relying more and more on online communities.  It was mentioned that it is very important that the right sources are used, as the Internet can also contain many sites or forums that have misinformation or irrelevant information.

This review emphasises that many different factors are important to people with multiple sclerosis when it comes to making a decision about their treatment.  Finding a way to balance and prioritise these varied issues will become increasingly critical as more options become available.  It is becoming clear that people living with multiple sclerosis want to take a more active role in this process and this is being recognised and encouraged by their healthcare professionals.

The full abstract for this review can be read here.

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