Rationale:
We aim to assess the utility of the Program of Active Consumer Engagement in Epilepsy Self-Management (PACES) en español with Spanish-speaking people with epilepsy (PWE). Explore pre- and post-PACES quality of life (QOL), mood, anxiety and global cognition measures for control and experimental PACES participants in a randomized control trial.
Methods:
A convenience sample of participants referred from a Level 4 epilepsy center with estimated IQ >70 (n =19, >18 years-old) were randomly assigned to control (treatment as usual) or experimental treatment (PACES en español) groups for eight weeks. The PHQ-9, GAD-7, Quality of Life in Epilepsy-31 (QOLIE-31), the Epilepsy Self-Efficacy Scale (ESE), and the Epilepsy Self-Management Scale (ESM) were administered one-week prior to and within one week of completion of this eight week period.
Results:
Most participants (73.7%) were male, born outside of the United States (89.5%), primarily from Mexico, had been in the US for 21 years, and averaged 10.3 years of education. Average age of epilepsy onset was 23.3 years, with an average epilepsy duration of 18.2 years. Independent t-tests comparing outcome change scores revealed statistically significant reduction in PHQ-9 scores, t=2.24 (17), p=.039 for PACES, M=-4.11, SD=3.21, compared to control, M=-1.10, SD=2.64, groups. GAD-7, QOLIE-31, Epilepsy Self Efficacy and Epilepsy Self-Management scales were not statistically significant between PACES and control groups.
Pearson correlations between remaining outcome measures (all, save the PHQ-9) and continuous clinical and demographic variables revealed positive relationship between age of first seizure and emotional wellbeing, r=.472, p=.048, n=18. Duration of Epilepsy was positively correlated with social functioning and MoCA changes scores (insert APA style stats from table). Lastly, emotional wellbeing was highly correlated with energy/fatigue change scores, r=.735, p=.001, n=18.
Conclusions:
Participation in PACES en español did improve severity of depressive symptoms on the PHQ-9 compared to controls. Remaining outcomes did not reflect improvement after the immediate completion of PACES, which is unlike the results found in earlier studies of PACES in higher educated, primarily white PWE. While the present study is preliminary and statistical power is a limiting factor, there is more to explore to understand this difference in benefit for this population after PACES. The positive correlation between age of first seizures and the QOLIE subscale, emotional wellbeing, was revealing and may suggest that with later epilepsy onset that the less emotional wellbeing is compromised. Of note, emotional wellbeing was highly correlated with energy and fatigue QOLIE subscales, emphasizing the important relationship between physical health and energy and emotional wellbeing.
Funding:
This presentation is a product of a Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP006398 from the Centers for Disease Control and Prevention. The findings and conclusions in this presentation are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention.