ABSTRACT
Purpose: The aim of this study was to assess parent satisfaction three years after the implementation of a pediatric epilepsy telemedicine program. Methods: The program was developed with support from the Ministry of Health through Hospital Nacional de Pediatría J.P. Garrahan. A secure internet connection was used for high-speed, high-definition video and audio. Synchronous face-to-face consultation between the patient and the neurologist was used. To evaluate the success of the program, at the end of the consultation the parent or caregiver of the patient was asked to complete a survey evaluating satisfaction with health care, cost, and privacy issues. The survey was administered by community health workers to the parents of patients that were in follow-up or first seen at the rural health posts during 2019. Results: Between January and December 2019, 116 consecutive parents of patients seen at the epilepsy telemedicine clinic filled out a semistructured questionnaire. Mean age of the patients was 8.5 years (range, 117 years); 85 % of the patients had a follow-up of more than 6 months. All the families felt supported by the team and were satisfied with the program in terms of epilepsy management. Less work- and schooltime lost, less travel time and costs, better access to medication, and more regular follow-up visits were reported. The parents considered they had received clear information about the epilepsy of their child. Conclusion: Telemedicine proves to be an important tool in the comprehensive management of people with epilepsy
Subject(s)
Humans , Infant , Child, Preschool , Child , Adolescent , Rural Areas , Telemedicine , Epilepsy , Patients , Child , Self-ManagementABSTRACT
En 2015, se observó un incremento en la incidencia de microcefalia congénita en recién nacidos en Brasil. Meses más tarde, se descubrió la relación causal entre el virus del Zika y estos hallazgos. Durante el primer brote en la Argentina, se reportaron 5 casos de síndrome de Zika congénito. En 2017, hubo un nuevo brote que involucró la provincia de Salta. En este trabajo, se presentan 2 casos clínicos con síndrome de Zika congénito autóctonos: una paciente con microcefalia congénita grave con lisencefalia, calcificaciones corticosubcorticales y ventriculomegalia y otra paciente con microcefalia posnatal con polimicrogiria asimétrica y calcificaciones subcorticales y retraso en la mielinización. El real impacto de esta enfermedad aún es incierto; es necesario un adecuado seguimiento multidisciplinario de los pacientes expuestos al virus del Zika para comprender mejor la infección y su historia natural.
In 2015, there was an increase in the incidence of congenital microcephaly in newborns in Brazil. Months later, the causal relationship between Zika virus and these findings was discovered. In Argentina, during the first outbreak there were 5 cases of congenital Zika syndrome reported. In 2017, there was a new outbreak which involved Salta province. We describe 2 patients with autochthonous congenital Zika syndrome: one of the babies with severe congenital microcephaly with lissencephaly, calcifications and ventriculomegaly; and another baby with postnatal microcephaly with asymmetric polymicrogyria, calcifications and delayed myelination. The real impact of this disease is still uncertain, so it is necessary an adequate multidisciplinary monitoring of patients exposed to Zika virus to better understand the infection and its natural history.