Your MS diagnosis: survey results
Most people newly-diagnosed with multiple sclerosis do not have access to an MS specialist nurse, which means they likely don’t receive care at an MS clinic, according to a survey on MSology posted earlier this year.
The objective of the survey was to learn more about people’s experience during their initial visit after being diagnosed. The project was wholly funded by MSology and developed in collaboration with a group of MS nurse advisors from across Canada.
A total of 251 people with MS responded to the survey between December 2018 and March 2019. Most respondents were female (about 90%), with an average age of 50 years, and living with MS for about 10-11 years. The average age of people when they were diagnosed with MS was about 39-40 years, which is somewhat older than one might expect. These results may have been influenced by the increasing number of people in their 40s and 50s who are now being diagnosed with MS.
People rated their knowledge of MS as low (average score of 2 on a scale of 10) at the time of their diagnosis. About 1 in 4 people said they had a family member or friend with MS. Interestingly, twice as many French-speaking respondents said they had a family member with MS compared to English-speaking respondents (34% vs. 15%).
MS specialist nurses can be invaluable in providing information, guidance and reassurance when a person is first diagnosed, but only 44% of respondents said they had access to an MS nurse. In Ontario, Canada’s most populous province, only 25% of people were able to contact an MS nurse. In Prince Edward Island, there are no MS clinics and no MS nurses.
At that first visit, people said that most of their face-to-face discussions with an MS nurse were about MS in general, how to manage symptoms, and the various treatment options. People were generally satisfied with topics that were explored at some length. However, time constraints mean that some important topics get less attention, and people were less satisfied if there wasn’t much time to discuss some of the things that were important to them. This had become an increasing problem over the past decade – as more drugs become available, more time must be spent explaining the options, weighing the pros and cons, and talking about the follow-up tests and procedures that will be needed. Reviewing all the information about medications is time-consuming and can leave little time to address a person’s many other questions about MS.
When treatment was limited to injectable drugs (prior to 2006), there was less urgency about starting a medication and most people didn’t talk about MS drugs at their first visit. That’s now changed. Over 90% of people diagnosed today are advised to start a medication at the first visit. This is because there is more research about the benefits of treatment MS early on, and there are many more treatment choices (four oral drugs, three infusion drugs) from which to choose. The survey also found that MS nurses play a key role in these discussions – 82% of people seeing an MS nurse were offered a treatment compared to only 64% of those who didn’t have access to an MS nurse. People who regularly saw an MS nurse were also more likely to be on a treatment at the time of the survey.
The survey also asked people to share their thoughts about MS medications. Some said that they started a treatment because they wanted to do something to fight their MS; that medications were a necessary part of their overall effort to improve their wellness; or to reduce the risk of developing disabilities later on in life. Among those not taking a medication, some felt that their wellness efforts alone were enough; some were still early in their disease and felt fine without a drug; some were afraid of side effects; and some were skeptical about the benefits of medication. This is consistent with other surveys, which have reported that people often start treatment only when they start to develop disability. Unfortunately, this delay means that many start a medication after their MS has worsened, which is when treatments will likely be less effective.
The First MS Visit survey was the latest in a series of research projects developed by MSology and its MS nurse advisory panel. The survey results were presented at the recent Consortium of MS Clinics meeting, held May 28-June 1 in Seattle. The full poster (Harris and colleagues. CMSC 2019; abstract MDC05) can be viewed online at https://docs.google.com/viewer?url=https://cmsc.confex.com/cmsc/2019/mediafile/Handout/Paper5915/MSNurse%2520Final%2520poster.pdf
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