Exploring quality of life perception in people with epilepsy and people imagining life with epilepsy

Epilepsy is a condition associated with high levels of stigma. Quality of life (QoL) is reportedly diminished in people with epilepsy worldwide. The purpose of our study was to describe and compare the self-reported QoL of people with epilepsy and people imagining life with epilepsy.

In this exploratory, observational study, global quality of life perception was assessed through a single question (Q1 of the QOLIE-31), consisting of a 0-10 points- Likert scale. Answers were obtained from 94 adult epilepsy patients and 417 individuals without epilepsy: 41 university students/graduates attending a summer school on epilepsy, 108 police officer trainees, and 268 police agent trainees. Descriptive statistics were applied.

Median values of 8 were found for self-perception of current QoL in all groups. Non-epilepsy participants' estimates of their QoL in case they had epilepsy were consistently decreased, with median values of 6 and 7 reported by police agent and police officer trainees respectively, and of 5 in the group of young health-related professionals specializing in epilepsy. Participants without epilepsy perceived the daily living domains of work and independence as those more likely to be affected by having epilepsy, in addition most of them expected an impact on mood and health status.

The imagined experience of having epilepsy is perceived as worse than the current experience reported by most epilepsy patients. Further studies are needed to unveil whether lowest scores reported by young health professionals are related with higher self-expectations in this subgroup, or could have been favoured by medical training with potential impact on stigma perpetuation in patients with epilepsy.