Impact of gender inequality on the educational and career development of young epileptologists in Italy: A survey of the Young Epilepsy Section - Italian chapter.

OBJECTIVE: The Young Epilepsy Section-Italian chapter (YES-I) is the Italian section of the International League Against Epilepsy (ILAE)-YES. It was founded in 2019 with the aim of increasing the involvement of young epileptologists within scientific associations and facilitating their educational training. The Education and Career Task Force designed a survey on the impact of gender inequality on the educational and professional growth of young epileptologists. METHODS: The survey was proposed via QR code during the 43rd National Congress of the Italian League Against Epilepsy (Padua, 8-10 June 2022), and subsequently distributed via email until 7th September 2022. RESULTS: Of the respondents, 73.6% were female. Of note, 51% of the entire sample answered that they found "no impact" of gender on educational activities (64.3% male against 46.1% female). Only 10% of women stated they have seen very much gender-related inequality in their education or career. However, the majority of our cohort (66%) thought that gender had a negative impact on progression within a scientific society, as well as in female leadership roles in clinical practice (67.9%). Furthermore female medical staff received little work recognition (56.6%). Lastly, 83% of responders did not have children, and only 37.7% declared their colleagues to be empathic in relation to absences for family emergencies. CONCLUSIONS: Lack of awareness of the gender inequality issue might explain inconsistencies in the findings of our survey. Despite the remarkable progress of women rights over the last century, our survey suggests that disparities in academic and decision-making roles exist also in the epileptology field.

Clinical characteristics of 80 subjects with KCNQ2-related encephalopathy: Results from a family-driven survey.

Variants of KCNQ2 are associated with a wide spectrum of disorders, ranging from Self-limiting Neonatal Epilepsy (SelNE) to Early Onset Developmental and Epileptic Encephalopathy (KCNQ2-DEE). Comorbidities associated with this end of the spectrum have been seldomly described and their impact on the life of patients and their families is yet to be investigated. Collaborating with caregivers from different European family associations, we have developed a questionnaire aimed at investigating the onset and frequency of epileptic seizures, anti-seizure medications (ASM), hospitalizations, stages of development, and comorbidities. Responses from 80 patients, 40 males, from 14 countries have been collected. Median age 7.6 years (4 months - 43.6 years). Of 76 epileptic patients (93.6%), 55.3% were seizure-free with a mean age at last seizure of 26.7 months. Among patients with active epilepsy, those older have a lower frequency of seizures (p > 0.05). We were able to identify three different clusters of varying severity (Mild, Severe, Profound), based on neurodevelopmental features and symptoms, excluding epilepsy. Patients in a higher severity cluster had a higher mean number of comorbidities, which had a higher impact on families. Notably, patients in different clusters presented different epilepsy onset and courses. This study constitutes the most extensive data collection of patients with KCNQ2-DEE, with a focus on comorbidities in a wide age group. The participation of caregivers helps to define the impact of the disease on the lives of patients and families and can help identify new primary and secondary outcomes beyond seizures in future studies.