Evaluation of a self-management intervention for adults with epilepsy in Taiwan: A longitudinal randomized controlled trial.

ABSTRACT

PURPOSE: Epilepsy is a neurological disease that causes recurrent seizures and can have a significant impact on a person's quality of life (QOL). A self-management intervention (SMI) can allow adults with epilepsy to modify behaviors in order to manage their seizures and evaluate the impact of medication and treatments on their daily lives. The purpose of this study was to investigate the effects of a SMI for adults with epilepsy. METHODS: This was a longitudinal randomized controlled trial. Adults with epilepsy between the age of 20 and 65 years were recruited from a medical center in northern Taiwan. Participants were assigned to an intervention group (IG) or control group (CG) through simple randomization. Data regarding demographic and clinical characteristics were collected at baseline (T0). In addition, participants answered nine validated self-report questionnaires, which were used as outcome measures. Following collection of baseline data, the CG received routine monthly counseling over the next 3 months. The IG received the routine monthly counseling, as well as individual face-to-face health counseling on self-management 1 h/month and remote counseling via the phone or computer network at least twice per month. After the first month (T1) and at the end of the third (T2) and sixth months (T3) participants answered the nine questionnaires again. Differences in outcomes between the IGs and CGs were analyzed by comparing scores for the nine outcome variables at T0 with scores at T1, T2, and T3 with generalized estimating equations. RESULTS: A total of 210 adults agreed to participate in the study; however, only 155 participants completed the questionnaires for all three time points 75 in the CG and 80 in the IG. The mean age of the 155 participants was 39.6 years (SD = 10.9). There was no significant difference between demographic or clinical variables between the two groups. The only difference in baseline scores (T0) among the nine self-report questionnaires was in epilepsy knowledge, measured with the Epilepsy Knowledge Profile questionnaire, which were significantly higher for the CG (mean = 32.28, SD = 3.92) than the IG (mean = 23.01, SD = 2.79) (p < 0.001). Generalized estimating equations (GEE) analysis showed scores decreased significantly at T3 from baseline for the CG for epilepsy knowledge and QOL (p < 0.001). Improvements in scores for sleep quality, anxiety, depression, self-efficacy, coping, and social support did not differ between groups. Classification of the IG by gender showed a significantly greater increase for males compared with females from baseline to T3 for epilepsy knowledge (p < 0.001). If we further classified the IGs by seizure frequency, participants with a seizure frequency of ≥1 per year had a more significant increase in epilepsy knowledge and increase in QOL compared with participants with a seizure frequency of <1 per year at T3 compared with T0. CONCLUSION: The lack of improvement in health-related quality of life (HRQoL) following the SMI may indicate that additional time is required to change behaviors that impact this variable for patients with epilepsy. Additional research should focus on variables associated with medication compliance, epilepsy knowledge, medicine symptom distress, self-efficacy, anxiety, and HRQoL.