PatientsLikeMe® Online Epilepsy Community: patient characteristics and predictors of poor health-related quality of life

Publish Date:

Monday, November 7, 2016


News Organization:

Epilepsy & Behavior

Source URL:

In collaboration with UCB, PatientsLikeMe established a community for people living with seizures in January 2010 which allows members to track their seizures, medication, and quality of life. As part of the community we designed a study using validated quality of life measures to learn more about the major drivers of distress in the community. From 3,073 respondents surveyed we found a high rate of key symptoms such as memory problems, fatigue, and problems concentrating. Many patients reported medication side effects and quality of life was significantly poorer in those with symptoms, side effects, tonic-clonic seizures, and recent onset. The study suggests taking a holistic approach to management.