Abstracts

Rationale: One third of the patients with epilepsy may not have their seizures adequately controlled, being defined as pharmacoresistant epilepsy. Disease modifying procedures such as neuromodulation could be considered, however there are sparse studies regarding
non-seizure outcome. This pilot study aimed to evaluate the adequacy and feasibility of using a pool of standardized tools to understand non-seizure related outcomes during neuromodulation as it related to quality of life.

Methods: An observational pilot study collecting data based on a pool of questionnaires was carried out. Questionnaires were filled up by the patients or their caregivers in online or in person sessions. Patients with refractory epilepsy submitted to at least one neuromodulatory procedure(VNS, DBS or both),with regular follow-up in the clinic and with at least one year of follow-up were included. Patients or caregivers unable to fill up the questionnaires were excluded. The questionnaires applied were presented in their portuguese version. The investigational tools included: Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55), PedsQL TM Epilepsy Module–Version 3.0, Beck Depression Inventory (BDI), Parental Stress Scale, Assessment Scale Hamilton Depression Questionnaire (HAM-17) and Quality of Life Questionnaire for the Portuguese Population (QOLCE-89). Patients were divided into four groups based on whether they were able or not to answer the questionnaires alone or with minimal help and whether they were under or over 18 years old. Forty patients submitted to neuromodulation and 20 controls will be included.

Results: Six patients submitted to neuromodulation were completed evaluated. Mean age was 16.6 years. Four of them had VNS, one had DBS and one had both.A half of the subjects were dependent on their daily life activities.The average time for complete filling was two hours.Due to the questionnaires quantity and length, it needed to be carried out in stages between consultations. The application of the HAM-17 and BDI questionnaires was not feasible in 3 patients because of cognitive deficits that prevented them from understanding the document alone or with minimal help. Another challenge presented in two cases was the understanding of caregivers for allowing the patients under 18 years of age with preserved cognition to fill out documents without their supervision to avoid bias. In one patient, the caregivers complained about specific items that were not adapted to their reality, such as the pedsQL and its questions related to physical activities, given that the patient has a disabling motor deficit. All families and patients qualitatively agreed that the full set of questionnaires appear to evaluate non-seizures related aspects of their disease.

Conclusions: It appears that the use of the proposed tools is feasible and that they might be effective in evaluating non-seizure aspects of this patient population.

Funding: None