Objective: To determine the validity and reliability of the Chinese parent proxy and child self-report
health related quality of life measure for children with epilepsy (CHEQOL-25) in Malaysia. Methods:
Face and content validity of the Chinese parent proxy and child self-report CHEQOL-25 was verified
by an expert panel, and piloted in five children with epilepsy (CWE). The Chinese CHEQOL-25 was
then administered to 40 parent proxies and their CWE (aged 8-18 years), from two tertiary hospitals,
at baseline and 2 weeks later. Results: Forty parents and their CWE were recruited. Cronbach’s alpha
for each subscale ranged from 0.56-0.83. At test-retest, the interclass correlation for all items ranged
from 0.68-0.97. Items 8 and 25 were removed as their corrected item-total correlation values were
Studies on the impact of epilepsy on employment have been extensively performed in European and some Asian countries but not in Southeast Asia such as Malaysia, a country with a robust economy, low unemployment rate, and minimal social security benefits for the unemployed. This study aims to determine the impact of epilepsy on employment in Malaysia.
Because of the nature of epilepsy, and the unpredictability of seizure recurrence, epilepsy requires long-term treatment with medications. As a consequence, epilepsy has a negative pervasive impact in children with epilepsy (CWE), and their parents. Hence, our aim was to explore the needs and challenges of parents and their CWE. In-depth interviews (IDIs) were conducted with 15 families (12 mothers and 3 fathers) and 15 CWE (aged 8-18 years). Data were transcribed verbatim and thematically analyzed using the descriptive phenomenology approach. The experiences of parents and their CWE could be divided into two time frames: "experiences during a child's first seizure" and "experiences whilst growing up with epilepsy". Parents' main concerns and worries were regarding their child's physical health, psychological and emotional wellbeing, academic achievement, and future. The children's main concerns were restrictions imposed, their interpersonal relationship with peers, and being independent in the future. Parents reported that they needed epilepsy-related information, continuity of care, and a parental support group, while CWE reported that their main needs were independence and autonomy. The views of parents and their child with epilepsy were similar in physical functioning and academic achievement. However, parents and children had different views on how epilepsy impacted on the child emotionally, as well as behavioral and interpersonal relationship with peers.
We aimed to cross-culturally adapt the parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Malay and to determine its validity and reliability among parents of children with epilepsy in Malaysia.