Caregiver perceptions of telemedicine in developmental and epileptic encephalopathies: a nationwide Spanish survey.

Introduction: Developmental and epileptic encephalopathies (DEEs) require intensive and multidisciplinary care. Telemedicine has emerged as a potential tool to improve access and reduce burden for caregivers and healthcare professionals (HCPs), but its acceptance and perceived value in severe epilepsies among caregivers and HCPs remain unclear. Methods: Two online surveys (August-November 2024) targeted caregivers of Spanish patients with DEEs and HCPs treating patients with DEEs practicing in Spain. Due to low HCP response ( Results: Caregivers (98% parents, 78% female) reported high healthcare demands and a preference for increased medical contact. Half used telemedicine, mainly telephone (47%) or email (20%), but satisfaction was significantly lower than with in-person care (mean 3.2 vs. 4.6 on 5-point scale; Discussion: Among caregivers of patients with DEEs, telemedicine was valued for its logistical benefits but not considered clinically equivalent, particularly for rehabilitative therapies and physical examination. These results should be interpreted cautiously, as telemedicine use in our sample relied predominantly on telephone and email, with very limited adoption of videoconferencing, the standard modality in neurological telemedicine, which restricts conclusions about its clinical equivalence. Tailored hybrid models preserving in-person high-complexity care and improved digital strategies are needed to address caregiver expectations and service-specific requirements. Findings should be considered exploratory and hypothesis-generating rather than confirmatory.