“All info is helpful; professional people try but we are all learning and teaching ourselves, it can be overwhelming.”
MSIF have published the results of an online survey taken by 879 people from 65 countries - including Ireland - about information, technology and MS.
The largest age group were people 51-60 (31%) followed by people 41-50 years (26.3%). More than three quarters of respondents were female, with 23% being male. More than half (56.5%) had relapsing-remitting MS, while 18.4% had secondary progressive MS, 11% had primary progressive and 4.5% had progressive-relapsing MS. 10% were unsure.
When asked where they sourced information about MS, The results highlight that the vast majority of people look to the websites of MS organisation, with medical or scientific websites coming second in popularity followed in third place by a doctor or nurse.
For a third of respondents, the factor that most increased the reliability of MS information was its scientific or statistical basis. A basis in a medical or professional opinion was ranked highest by 28% relied respondents, and personal experience was chosen by 24.5%.
More than half (55.8%) used social media for information on the latest MS research. 46.7% used it for information on MS diagnosis and treatment. More than a third (38.8%) used it to solicit other people’s opinions on an MS topic, and to connect with other people with MS (37.8%).
The majority of people taking the survey did not use any apps (75.5%) to manage their MS or assistive technology to access the internet (77%).
More than 232 comments were documented as part of the survey. The most common responses included people’s trust in their MS organisation to only present reliable information on their websites and a tendency to test the reliability of information found online on scientific research databases such Pubmed.
Further reading
Who are your trusted online sources of information about MS?