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

ABSTRACT:

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

SUBMITTER: Whitney R 

PROVIDER: S-EPMC9712483 | biostudies-literature | 2022 Dec

REPOSITORIES: biostudies-literature