Paediatric Epilepsy Nurse Children's Hospital, London Health Sciences Centre London, Ontario, Canada
This abstract is a recipient of the Nurse and Advanced Practice Provider Abstract Award
Rationale: The Paediatric Epilepsy Program at Children’s Hospital, in London, Ontario diagnoses and manages approximately 300 new pediatric epilepsy cases per year. Of these children, 30% will become drug resistant and many of them will become surgical candidates. In pediatric epilepsy surgery, little is known about parental decision making for/ or against epilepsy surgery.Making complex decisions has the potential for increased personal and family decisional conflict. Often, complex medical conditions, like epilepsy, with multiple comorbidities there is more than one treatment option, with more than one benefit or risk. The process of Shared Decision Making (SDM) involves the collaboration of health care professionals and patients making medical decisions together. The goal of SDM is to actively include patients in decision-making that involves their care by providing a more structured, process that considers both the best evidence and patient values. Access to a Decision Coach and/or patient decision aids can support patients and families in gaining knowledge of treatment and care options, evaluating option benefits and drawbacks, and likelihood of each. Clarifying what is important to patients their families are all integral to a comprehensive approach to making challenging medical decisions. Methods: A quality improvement project was initiated where potential epilepsy surgical patients were identified by the pediatric epileptologist. The SDM process was explained and offered to the patient/family, and with their consent a referral was made to the SDM coach. The patient/family and subsequent SDM visits were defined by the type of surgery that was recommended. If the child was to receive a Vagal Nerve Stimulator or direct resection, then the patient/family was offered two visits with the SDM coach; I) the first regarding the initial surgical recommendation and ii) the second after the specific surgical plan was put in place.A third visit was offered to those who required invasive monitoring and surgery. These visits provided patients/families with evidence-based patient education materials tailored to their specific decisional needs to help patients/ families make specific deliberative choices. The decision process was assessed during these visits utilizing a Decisional Conflict Scale, the Ottawa Family Decision Guide, Preparation for Decision Making Scale (for knowledge/satisfaction levels) post decision intervention, and the post Decision Coach Questionnaire. Results: Fifty families were offered SDM Coaching consults of which 5 were no shows/refused. Forty-five families completed initial visits, four completed a second visit, and one completed a third visit. Of the 45 total consults, six were for vagal nerve stimulation and 39 for epilepsy surgery with or without invasive monitoring. Preliminary results show overall increased satisfaction with the intervention of the SDM coach. Final outcome analysis is ongoing and will be included in the final poster. Conclusions: Although epilepsy surgery is a curative procedure in children with drug resistant epilepsy, families often experience anxiety, uncertainty and decisional conflict during this process. SDM appears to improve and facilitate parental decision conflict and satisfaction utilizing decision coach services outside the circle of care and individualized epilepsy surgery education aids. Funding: Please list any funding that was received in support of this abstract.: Unfunded study
