Determining the Needs of Epilepsy Patients and Healthcare Providers in Ketogenic Dietary Therapy

Overview:

For our capstone project, we conducted a qualitative needs assessment of healthcare providers and caregivers administering the ketogenic diet to children with epilepsy. Our data was collected via a nationwide diet clinic survey and patient/caregiver–focused interviews. The survey was generated to gather data on current practices and protocols in ketogenic diet clinics across Canada. Twelve out of eighteen clinics responded to the survey entitled “Canadian Health Professional Survey to Assess the Current Practices of Ketogenic Diet Therapies”. The data highlighted significant variation in resources, efficiencies, and quality of care amongst diet clinics. Other areas of improvement were related to methods of initiation, home monitoring and funding.

Phone interviews were conducted with parents and caregivers of children using the ketogenic diet to treat their child’s epilepsy. Our aim was to gather information from parents and discuss various aspects of their experience with the ketogenic diet. Interviewees were asked questions related to the initiation process, sources of information and ongoing support, financial impact, and impact on daily life, in the hopes of identifying common themes and challenges mentioned by the parents. The parents and caregivers in our study had positive perceptions of the care received during the administration of the ketogenic diet to their children. That said, we identified multiple areas for improvement that included challenges related to preparatory knowledge, side effects, measuring effectiveness and personal barriers. In order to deliver optimal care for children on the ketogenic diet and their families, targeted efforts at optimizing care in the aforementioned areas may be taken.

Capstone Team: 

Samar Mouaaz
Alexandra Panicucci

 

Capstone Advisory Committee:

Eduard Bercovici
Jennifer Fabe
Sandy Schwenger

 

TRP Faculty Lead:

Adriana Ieraci