New survey data released in the USA reveals that people with hard to control epilepsy experience a poor quality of life, but that many do not proactively pursue new treatments that could help.
The 'Quality of Life in Epilepsy' survey, sponsored by Cyberonics, reveals that people with epilepsy are three times more likely to be unemployed than the national average. Almost half of these patients suffer from depression and believe that epilepsy has reduced their daily activities and their personal and professional goals for the future. Three-quarters of the epilepsy patients surveyed strongly believe that even modest improvements in seizure control would significantly improve their daily lives but only one-third of them regularly ask their doctor if new or alternative treatments are available.
Only 25 per cent of surveyed patients have been seizure-free for the past year, with the remaining 75 per cent experiencing an average of 70 seizures each year.
According to an earlier study by Dr Patrick Kwan and Dr Martin Brodie, which was published in The New England Journal of Medicine, 36 per cent of patients with epilepsy have inadequate control of seizures with antiepileptic drugs (AEDs); resulting in substantial deleterious effects on individual health and quality of life and a heavy burden on society. These patients are considered refractory and are in need of another therapy besides medication to gain seizure control. That study concludes that after two failed drug attempts, the likelihood of another drug succeeding is only four per cent.
The new survey on quality of life discovered that 65 per cent of people with refractory epilepsy have tried between two and five medications, while an additional one-quarter of patients have tried between six and ten. Moreover, half currently experience side effects associated with their medications and find these side effects extremely frustrating. Managing epilepsy has to be a balance between controlling seizures and the number of medications each person is taking and their side effects.
Three-quarters of the patients surveyed would be very interested in learning about new treatment options and finding ways to reduce the number of medications they take, according to this survey. Furthermore, approximately 80 per cent of the survey participants would consider changing their current treatment if their doctor told them about a new treatment that might maintain their current level of seizure control without the negative side effects.