September 20, 2024 | 11.12
READING TIME: 3 minutes
Lennox-Gastaut syndrome (LGS) requires faster and more accurate diagnosis. This is what emerged from a European real life study presented during the 15th European Epilepsy Congress (ECC) that recently took place in Rome. The data, obtained using the Adelphi LGS Disease Specific Programme* (DSP), showed that 454 pediatric and adult patients affected by LGS, across Europe, had to wait an average of 12.3 months to receive a correct diagnosis of the disease, after the first attack at 4 years (average age). Although patients take on average more than 3 antiepileptic drugs per day, ongoing challenges remain for an effective treatment of LGS.
In detail – as stated in a note infused by Ucb – the results underline the need for new treatments that target both drug-resistant seizures and non-convulsive symptoms of Lgs. In fact, 71% of patients (324 out of 454) had at least one concomitant comorbidity, including psychomotor or cognitive problems, attention deficit hyperactivity disorder (ADHD), sleep disorders or insomnia. 19% and 28% of patients had, respectively, severe or very severe physical and mental impairments, many of which persisted with age. 47% of patients reported having a quality of life, at least in part, mediocre. Daytime seizures had the greatest impact on quality of life for 39% of patients.
“The impact of LGS goes beyond seizures and can include severe cognitive impairment, communication difficulties, psychiatric problems, behavioral challenges and mobility problems. All of these factors – says Konrad Werhahn, Global Medical Affairs at UCB – constitute a significant burden for patients and their families/caregivers. At UCB we recognize the need for a multidisciplinary and personalized approach, which addresses the medical, educational, psychological and social needs of each patient throughout their life”.
LGS affects approximately 1 million people worldwide. However, diagnosis remains complex and challenging due to the lack of specific biological markers for the many possible causes and the presence of diverse symptoms. Although many approved drugs are available for LGS, there are still unmet needs for treatment. These drugs induce improvement, but usually do not have a long-term and lasting effect, which makes the introduction of new therapies that effectively target seizures and alleviate non-convulsive outcomes necessary to improve the prognosis of patients with the disease.
Also during the EEC, a new electronic device to support the diagnosis of LGS, based on the criteria of the International League Against Epilepsy (ILAE), was presented. Developed by a group of 10 epilepsy experts, with a digitalization process funded by UCB (without any intervention on its content), the tool was designed to help doctors assess the possibility that their patient has LGS. The questionnaire takes into account the characteristics that can be a discriminant between the presence or exclusion of the disease, providing a result that will guide future management. The prototype – the note concludes – will now be tested and validated before being used by healthcare professionals in a clinical setting.
