The state of pediatric tuberous sclerosis complex epilepsy care: Results from a national survey

OBJECTIVE: Epilepsy associated with tuberous sclerosis complex (TSC) can be challenging to treat and is associated with significant disease burden. Our objective was to better understand the state of epilepsy care of TSC amongst pediatric neurologists in Canada, identify gaps in care and determine whether access to a dedicated TSC clinic has an impact on epilepsy management. METHODS: A survey was developed after a literature review and discussion amongst two pediatric epileptologists and one nurse practitioner with expertise in TSC about the state of epilepsy care of TSC patients in Canada. Canadian pediatric neurologists were asked to participate in sharing their experiences via an anonymous web‐based survey through the Canadian League Against Epilepsy (CLAE) and the Canadian Neurological Sciences Federation (CNSF). RESULTS: Fifty‐seven responses were received. Access to a dedicated TSC clinic was reported by 25% (n = 14). Sixty percent (n = 34) reported performing serial EEG monitoring in infants with TSC and 57% (n = 33) started prophylactic antiseizure therapy when EEG abnormalities were detected, regardless of whether there was access to a TSC clinic (P = .06 and P = .29, respectively). While 52% (n = 29) did not feel comfortable prescribing mTORi for epilepsy, 65% (n = 36) indicated they would consider it with additional training. Epilepsy surgery was offered in 93% (n = 13) of centers with a dedicated TSC clinic but only 45% of centers without a TSC clinic (n = 19) (P = .002). SIGNIFICANCE: Our findings demonstrate the variability in neurological care of pediatric patients with TSC as it pertains to epilepsy management. There is a need for the establishment of epilepsy practice guidelines and a national network to support clinical practice, research, and education.