Social impairment and stigma in genetic generalized epilepsies

Abstract Introduction Patients with epilepsy have poor social outcome. Multifactorial factors are usually involved, but among them, stigma features may have an important role. Genetic generalized epilepsies (GGEs) were previously considered “benign” syndromes. The aim of our study was to assess social impairment and stigma in GGE and to evaluate differences between the following GGE subsyndromes: juvenile myoclonic epilepsy (JME), juvenile absence epilepsy (JAE), and generalized tonic–clonic seizures alone (GTCSA). Additionally, we compared these outcomes with outcomes from a cohort of patients with epilepsy with mesial temporal lobe epilepsy with hippocampal sclerosis (MTLE-HS), a severe and difficult-to-treat syndrome. Results were compared with social data from the general population. Methods Adult patients with epilepsy with a previously classified GGE or MTLE-HS were consecutively invited to fill in a sociodemographic and stigma questionnaire in outpatient clinic. Clinical data and psychiatric comorbidities were retrieved from clinical notes. Results Questionnaires from 333 patients were obtained: 226/67% from patients with GGE (JME: 106/31.8%, GTCSA: 74/22.2%, and JAE: 46/13.8%) and 107/32.1% from patients with MTLE-HS. We found that patients with GGE have a good academic achievement but they have increased difficulties in finding a partner, higher rates of divorce, and a reduced number of children per woman and per man when compared with general population. We also observed that patients with GGE have higher rates of unemployment (22.6%) and lower monthly income than general population. Severe problems in housing were only seen in GGEs. Of these, 3 patients (1.3%) were in homeless condition. Over half (52%) of patients with MTLE-HS and over a quarter (28%) of patients with GGE experienced felt stigma. Psychiatric comorbidity was highly prevalent among GGE (34.1%), especially in patients with refractory epilepsy. Mood and anxiety disorders were the most prevalent conditions. No other significant differences were found between GGE subsyndromes. Discussion We found an impairment in every social domain assessed (except in level of education) when compared with general population. Most of the social outcome parameters were unexpectedly close or similar to MTLE-HS or even worse as it was the prevalence of homelessness among GGE. Social impairment is underdiagnosed and might be considered in clinical practice even in syndromes for some time considered benign such as GGE.