Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting. In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence. (Check out our press release for more on this survey, which we conducted with our partner UCB. PatientsLikeMe and UCB launched the epilepsy community in 2010.)
Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior. This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings. For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition. That is – until they joined PatientsLikeMe. Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, the more friends with epilepsy that users had in the online community, the more benefits they experienced from using the site.
Do you agree that having friends with the same condition – either online or offline – has affected your experience for the better? Share your thoughts in the comments section.
You can search for patients by more than 10 seizure types, such as simple partial, myoclonic, atonic, and tonic-clonic.
You can also search by 19 different epilepsy types, including temporal lobe, frontal lobe, occipital lobe, juvenile myoclonic, Lennox-Gastaut syndrome, and epilepsy with grand mal seizures on awakening.
Others in the community have indicated a causative comorbidity for their condition, such as:
Head injury (242 patients to date)
Brain tumor (70 patients to date)
Stroke (38 patients to date)
Encephalitis (34 patients to date)
543 patient members were diagnosed recently (5 years or less) and 823 were diagnosed 20+ years ago.
As part of this first survey, members told us the top issues most important to them – indicating the top three as overall quality of life, seizure worry (i.e., impact of seizures) and mental activity (i.e., thinking, concentrating, memory).
How are our members treating their condition?
Patients are using thousands of treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, procedures, and more.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.