PP07.7 – 2291: National care path ketogenic diet in children with refractory epilepsy and metabolic diseases

Abstract

Objectives Designing a clinical care path for the application of the ketogenic diet (KD) in children (0–18 years) with refractory epilepsy and/or metabolic diseases in order to raise the standard of treatment with KD. Methods From September 2012 until June 2014 a project group of delegated members (dietitians, pediatrician metabolic diseases, pediatric neurologist, neurologist and epilepsy nurse) of the Dutch Multidisciplinary Ketogenic Diet Group wrote a clinical care path based on recent scientific evidence as well as clinical practice, combined with expert opinions. Previously, this format has successfully been used for writing national care paths of 14 metabolic diseases. The meetings and process of design of the care path were arranged by a coordinator. Members communicated frequently by teleconference calls and email. All members of the Dutch Multidisciplinary Ketogenic Diet Group were asked for their vision and comments on a completed version. At a national meeting consensus has been reached. Results The KD treatment is based on a multidisciplinary approach. The final version of the care path includes 55 pages and consists of three parts. Part one includes background information of the KD as treatment option in refractory epilepsy in children, the actions taken prior, during and after discontinuation KD. Part two focuses on those metabolic diseases treated with the KD like Glucose Transporter Deficiency type I (GLUT-1), Pyruvate Dehydrogenase Deficiency (PDHC) and some mitochondrial diseases. Part three includes the description of the role of caretakers involved in KD treatment. This clinical care path is also accepted as a national guideline by the Dutch Society of Pediatrics, the Dutch Society of Pediatric Neurology, the Dutch Epilepsy Society (EVN) and the Dutch Society of adults or children with Metabolic Diseases (VKS) Designing a clinical care path for the application of the ketogenic diet (KD) in children (0–18 years) with refractory epilepsy and/or metabolic diseases in order to raise the standard of treatment with KD. From September 2012 until June 2014 a project group of delegated members (dietitians, pediatrician metabolic diseases, pediatric neurologist, neurologist and epilepsy nurse) of the Dutch Multidisciplinary Ketogenic Diet Group wrote a clinical care path based on recent scientific evidence as well as clinical practice, combined with expert opinions. Previously, this format has successfully been used for writing national care paths of 14 metabolic diseases. The meetings and process of design of the care path were arranged by a coordinator. Members communicated frequently by teleconference calls and email. All members of the Dutch Multidisciplinary Ketogenic Diet Group were asked for their vision and comments on a completed version. At a national meeting consensus has been reached. The KD treatment is based on a multidisciplinary approach. The final version of the care path includes 55 pages and consists of three parts. Part one includes background information of the KD as treatment option in refractory epilepsy in children, the actions taken prior, during and after discontinuation KD. Part two focuses on those metabolic diseases treated with the KD like Glucose Transporter Deficiency type I (GLUT-1), Pyruvate Dehydrogenase Deficiency (PDHC) and some mitochondrial diseases. Part three includes the description of the role of caretakers involved in KD treatment. This clinical care path is also accepted as a national guideline by the Dutch Society of Pediatrics, the Dutch Society of Pediatric Neurology, the Dutch Epilepsy Society (EVN) and the Dutch Society of adults or children with Metabolic Diseases (VKS)