With developments in the diagnosis and management of DEEs, clinicians have improved their awareness of the genetic basis of specific forms of these diseases, including Lennox-Gastaut syndrome, Dravet syndrome, Tuberous Sclerosis Complex, and others. Appreciation of specific testing best practices, including tests for specific genetic mutations associated with DEEs, can enable clinicians to better match patients to appropriate therapy with specific indications and data associated with these conditions. Clinicians must be able to educate patients regarding efficacy, safety, and the practical use characteristics of various treatment options.
Clinicians must work to address challenges associated with inadequate transition of care, ensuring that a strong multidisciplinary team is educated regarding patient needs and best practices in facilitating effective care across transitions. Evidence indicates potential for improved management of epilepsy through both enhanced communication with patients and improved provider knowledge of novel therapeutic options.
Recognizing and addressing barriers to effective treatment is integral to the optimized management of epilepsy. Major barriers include potential treatment-related adverse events, driving restrictions, and difficulties in securing and maintaining employment. In addition to misdiagnosis in epilepsy, suboptimal use of available treatments is common, with only 25 of 324 patients in one study experiencing significant improvement with optimized use of antiepileptic drugs or surgery. With enhanced assessment and treatment, a further 16 patients were rendered free of seizures through the study follow-up period.1
For patients with DEEs (and their parents/caregivers), it is imperative for the clinician to set realistic expectations about treatment. The efficacy of treatments can vary among patients, which has been demonstrated in epilepsy clinical trials in which individual responses vary and not all patients experience clinical benefit.2 It is essential for clinicians to provide evidence-based information about treatments to set realistic expectations with their patients.
SDM between patients and providers is encouraged to formulate and maintain safe and effective treatment plans.3,4 In the shared decision-making format, the steps include (1) invite the patient to participate; (2) present treatment options; (3) provide information on risk and benefits; (4) assist patients in evaluating options based on their goals and concerns; (5) facilitate deliberation and decision making; and (6) assist patients to follow through on the decision. This process is designed to provide an open and motivating environment to encourage patients and their caregivers to actively engage in care.
