Abstracts

Rationale: Transition of care for youth with epilepsy has emerged as an important topic for professionals in the epilepsy field. Nevertheless, the attitude of families and relatives of youth with epilepsy toward the transition of care remains unknown. A prior needs assessment survey, indicated that 74% (n=359) of families of youth with epilepsy identified transition of care as an unmeet need. The hypothesis is that parents of youth with epilepsy has not been offered the opportunity to transfer care. This study describes the status of the transition of care in families that participated in the Project COPE interventions at baseline and after 6 months of the intervention. Methods: Parents of youth with epilepsy participating in COPE where asked whether they have a transition of care plan and/or have discussed transition of care with their health care professional. One out of four session of Project COPE targeted transition of care as an important strategy to introduce adolescents with epilepsy and their relatives into adult epilepsy care. Results before and after the Project COPE are described. Results: Forty four families participated in the intervention. Twenty one families had adolescents with epilepsy with ages between 14-18 years. Most of the families never considered transition of care (n=14) versus 7 families who considered transition of care. Only two out of 23 families had experienced any discussion about transition of care with their health care professional. Six months after the Project COPE intervention, six families still did not considered transition of care. Conclusions: Transition of care, event when previously recognized as an unmet need for adolescents with epilepsy, remains not a top priority for the families of youth with epilepsy participating in the Project COPE intervention. The causes of this reluctant behavior remain unclear and it was not explored in our study. Continued education and appropriate transition of care planning could be an incentive for these families to participate and seek transition of care in the future.