New data presented at the recent 15th European Epilepsy Congress highlight the need to expand measures to identify and address the diagnostic delays and enormous disease burdens, including seizure- and nonseizure-related burdens experienced by patients with Lennox-Gastaut syndrome (LGS).

The researchers employed data from the Adelphi LGS Disease Specific Programme (DSP) from 454 pediatric and adult LGS patients across Europe. The data revealed that on average, the time to receive a correct LGS diagnosis is 12.3 months following the first seizure at age 4 years (mean average age), illustrating the extensive wait patients and their families encounter to obtain an accurate diagnosis.

Other highlights revealed that despite patients receiving more than three (3.4) antiseizure medications on average daily, continuing challenges persist in effectively managing and treating LGS. Some of the data revealed the following:

• 71% of patients (N = 324/454) experienced at least one concomitant comorbidity, with the most commonly reported including psychomotor or cognitive impairment, attention-deficit/hyperactivity disorder, sleep disorder, or insomnia
• An estimated 19% and 28% of patients experienced severe or very severe physical and mental impairment, respectively, many of which persist with age, and 47% of patients were reported to have at least some degree of poor quality of life
• 39% of patients indicated that daytime seizures were reported to have the most significant impact on the quality of life.

The researchers indicated that these findings clearly illustrate the need for novel treatments targeting both drug-resistant seizures and the nonseizure symptoms of LGS to improve the long-term prognosis of individuals who live with LGS.

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