Examining quality of life in an Australian cohort of people with epilepsy over six years — Understanding the role of stigma and mood

Aim: Research examining quality of life (QoL) among people living with epilepsy (PWE) consistently highlights the detrimental impact of stigma, anxiety, and depression, as well as the dynamic and changing nature of QoL over time. This paper represents the first panel study of the Australian Epilepsy Longitudinal Survey (AELS), examining factors that influence the QoL of PWE over a six-year interval, particularly focusing on experiences of stigma, depression, and anxiety. Methods: Ninety-two adults participated in both Wave 2 (T1; 2010) and Wave 4 (T2; 2016/17) of the AELS. Average age at T2 was 53.4 years [standard deviation (SD) = 15.3; range: 22–82; 55% female]. Over the study interval, there was a shift towards more younger participants moving out of high school and older participants moving into retirement. We explored the impact of (i) experiences of stigma, (ii) mood, and (iii) sociodemographic factors on QoL at both T1 and T2 via the use of correlation analyses. Hierarchical regression was used to determine the strongest predictors of QoL at T2. Results: Occurrence of recent seizures, stigma, anxiety, and depression measured at T1 were all significantly correlated with total QoL at both T1 and T2. Sociodemographic factors including years of education, and weekly income before tax were not significantly correlated with QoL at either T1 or T2. QoL and depression at T1 were identified as the strongest predictors of QoL at T2 (six years later). Discussion: The current study supports previous research highlighting the importance of psychological factors in understating QoL in PWE, particularly stigma, anxiety, and depression. In particular, it highlights the impact of depression on QoL over a 6-year interval, providing evident for the long-term nature of this relationship.