Humanistic and Economic Burden of Dravet Syndrome: Multidisciplinary Approach to Recognize and Address

Target Audience
The educational design of this activity addresses the needs of neurologists, pediatric neurologists, pediatricians and other health care professionals (including physicians, physicians-in-training, nurses, physician assistants, nurse practitioners, pharmacists, etc.) involved and/or interested in the management of patients with severe forms of pediatric intractable epilepsy.

Statement of Need/Program Overview
Dravet syndrome is a severe, intractable and difficult-to-manage epileptic syndrome, characterized by marked and prolonged clonic and tonic-clonic, generalized and unilateral seizures which progress to multiple seizure types, slowing development and cognitive abilities with comorbid behavioral disorders. Experts consider Dravet syndrome among the most challenging epilepsy syndromes to manage due to its intractable seizures, recurrent status epilepticus and intellectual disabilities. The significant burden of disease Dravet syndrome places on both patient and family/caregiver is profound. However, clinicians may not be intimately knowledgeable about its recognition, diagnosis, management and transition from pediatric to adult care and further limited on their recognition of the burden of disease and its adverse effects on quality-of-life in patients and families/caregivers dealing with Dravet syndrome and how best to address and support such individuals. Moreover, limited effective treatment options for Dravet syndrome adds to the clinical complexity of its management; newer, more effective treatment options are being investigated. Importantly, families/caregivers are often wholly unprepared to deal with the myriad of clinical and nonclinical issues that they will face on their journey. Accordingly, extensive education is needed to ensure that clinicians, families/caregivers have the resources they need to improve care and meet challenges throughout the continuum of care, from diagnosis, to treatment, to transition.

The activities comprising this educational initiative, of which this is the first, are altogether designed to improve knowledge and behaviors related to diagnosis, management, and overall care of Dravet syndrome and subsequently Lennox-Gastaut syndrome (LGS) while improving competence in their recognition, diagnosis, treatment and management of comorbidities and nonclinical issues. This activity will focus on the human and financial toll of caring for Dravet syndrome from both clinician and caregiver perspectives.

Learning Objectives
After completing this activity, the participant should be better able to:

Recognize the psychosocial challenges and stress-related comorbidities of caregiving for a patient with Dravet syndrome
Explain why taking a multidisciplinary approach to addressing the needs of parents and siblings of patients with Dravet syndrome, is more meaningful including identification of sources of psychosocial support, caregiver/sibling relief, wellness interventions