Development of Pediatric Epilepsy Care Program

Abstract

Epilepsy is a chronic neurological disease associated with physical, psychological, social, and intellectual impacts on children and their families. Inappropriate epilepsy care could affect epileptic children’s quality of life. The purposes of this research were to determine gap of epilepsy care from stakeholder perspectives, develop and assess the effect of epilepsy care program (ECP) for pediatric patients. This research was conducted in three phases. In Phase 1, gaps of epilepsy care were identified by interviewing four groups of stakeholders including pediatric patients, caregivers, service providers and finance administrator. The interview questions were developed based on gaps of epilepsy care from literatures. During Phase 2, focus group interview of stakeholders including patients, caregivers, service providers and media experts was conducted to discuss on the development of ECP. In Phase 3, a quasi-experimental study with pre-post design was conducted to assess clinical and humanistic outcomes in pediatric epilepsy patients. Study participants included 16, 11 and 54 individuals for phase 1, 2 and 3, respectively. The participants were constructed via purposive sampling of stakeholders from Queen Sirikit National Institute of Child Health. Content analysis was conducted to make study conclusions for phase 1-2. Descriptive statistics and inferential statistics including Paired t-test and Wilcoxon signed-rank test were used for data analysis in phase 3. Results revealed that a major gap of epilepsy care was lack of knowledge on epilepsy care among pediatric patients and caregivers. Experiences of stress and stigma among caregivers were identified as well. The program consists of three activities: epilepsy care education (ECE), self-help group (SHG) and pharmaceutical care. ECE was provided through several channels e.g., social media, book, telephone. SHG aims for sharing experiences and providing social support among patients, caregivers and multidisciplinary team. Pharmaceutical care was used to identify and manage for medication related problems. For phase 3, the program showed the effects on clinical outcomes including seizure frequency and adherence score. The frequency of seizure (P < 0.001) and drug adherence score (P = 0.001) among pediatric epileptic patients after participating in the program was significantly different compared to those before participating in the program. In addition, quality of life score among the patients after participating in the program was significantly higher than that before participating in the program (P < 0.001). The ECP program can improve the clinical and humanistic outcomes of pediatric epilepsy patients. However, further studies for program implementation and cost-effectiveness evaluation are needed.

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