The ARCH Lab contributed to a study titled “Validation of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55 and QOLCE-16) for use by parents of young adults with childhood-onset epilepsy”.
The objective of the study was to provide a reliable way of assessing long-term health-related quality of life in young adults with childhood-onset epilepsy. The parent-proxy reported Quality of Life in Childhood Epilepsy Questionnaires – both the 55-item (QOLCE-55) and 16-item versions (QOLCE-16) – were evaluated with the aim of allowing for the utilization of a consistent informant (the parent) across the youths’ stages of development. Data came from 134 young adults (aged 18 to 28 years) with childhood-onset epilepsy, recruited through community and tertiary care centers across Canada.
Using a consistent measure and informant (parent) across the stages of development is essential to reliably evaluate outcomes and change over time. The results provide support that the QOLCE-55 and QOLCE-16 can be reliably used among young adults with a history of childhood-onset epilepsy.