Reported service needs at diagnosis of epilepsy and implications for quality of life

This paper reports on contributing factors to Quality of Life (QoL) in an Australian community sample of people with epilepsy (PWE).

Three hundred and ninety-three respondents or 29.6% of people on the Australian Epilepsy Research Register participated in Wave 4 of a longitudinal survey. A quantitative analysis was undertaken and a qualitative investigation examined open-ended responses by 44 PWE on the support services that they received following diagnosis of epilepsy.

Total Quality of Life in Epilepsy-31 Items (QOLIE-31) score for the community-based sample was 55.99 (SD 19.85) [Range 6.34-96.20]. Age, paid employment, seizure frequency, number of antiepileptic drugs (AEDs), and perceived prosperity had significant impacts on QoL. In addition, use of support services showed that availability of a first seizure clinic, accurate information on support services and peer support were associated with the highest QoL. A qualitative investigation revealed that on first diagnosis, a lack of information was the main theme. Furthermore, PWE reported a lack of understanding of available supports by a range of health professionals, schools, and in the general community.

Psychosocial factors were important in explaining QoL, and the positive effects of first seizure clinics, accurate information on support services, and of peer support have been confirmed in the literature. The lack of knowledge of support services on being diagnosed with epilepsy is a problem evident in the community and pathways are required to support people dealing with their epilepsy.

More emphasis is needed in providing availability of supports to enhance the future wellbeing and QoL of people when epilepsy is diagnosed.