Relationship Between Patient Activation and Quality of Life in HCN1-Related Epilepsy

Epilepsies due to variation of the HCN1 gene can be associated with long-term neurological and psychiatric comorbidities, which may impact daily living. The degree of patient empowerment in managing their disease substantially impacts how they assess QoL. This study aimed to investigate the relationship between patient activation and health-related quality of life (HRQOL) in adults with HCN1-related epilepsies.

A cross-sectional study was conducted among 403 adult patients with controlled epilepsy attending neurology clinics. Informed consent was taken verbally. Participants completed the Patient Activation Measure (PAM) and Quality of Life in Epilepsy Inventory (QOLIE-31). Descriptive, correlation, and regression analyses were performed using IBM SPSS Statistics version 26.

There was a moderate, positive correlation between patient activation and HRQOL (r = 0.412, p < 0.001). PAM scores were higher in females (p < 0.001), and HRQOL is reported to be better by males (p = 0.010). PAM and QOLIE scores differed significantly with age (p < 0.001), with the highest proportions in the 35-44 and ≥55 years age groups, respectively. Regression analysis showed that greater patient activation (B value 1.85, p < 0.001) and older age (B value 0.48, p = 0.017) were positive predictors of HRQOL. At the same time, female gender, later onset of epilepsy and frequency of seizures were negative predictors.

Increased patient activation is strongly associated with better HRQOL in HCN1-associated epilepsy. Interventions that enhance patient involvement, self-management, and disease awareness may improve psychosocial and clinical outcomes in these patients.