Impact of COVID-19 on Spanish patients with Dravet syndrome and their caregivers: consequences of lockdown. / Impacto de la COVID-19 en pacientes españoles con síndrome de Dravet y sus cuidadores: consecuencias del confinamiento.

INTRODUCTION: The COVID-19 pandemic caused a state of alarm in Spain in March 2020. The necessary approach to the care of patients with Dravet syndrome (DS) makes them and their caregivers a vulnerable group in emergency situations. OBJECTIVES: To explore the impact of the COVID-19 pandemic on the management and condition of Spanish patients with DS and their caregivers and families. MATERIALS AND METHODS: Analysis of data belonging to Spanish families taken from a European online survey (14 April-17 May 2020). It included data on DS patients, on the disease and on caregivers before and after lockdown during the state of alarm. RESULTS: Sixty-nine Spanish families participated; average age of patients: 12.6 years. Except in 19% of the cases that were isolated, protective/isolation measures for patients were followed without increasing. Epilepsy remained stable, with no medication or resource/personnel availability issues. Sleep-wake pattern (61%) and behavior (41%) of patients changed. Behavior change was associated with seizures during lockdown and with caregiver emotional state (changes in 76%). Psychological support was offered to only 9% of caregivers. Thirty-eight per cent of patients did not receive remote care. CONCLUSIONS: The experience gathered during the lockdown has allowed the detection of points of improvement to ensure the proper management of DS and to keep the situation of patients and caregivers stable. All of this with a prominent role of telemedicine.

TITLE: Impacto de la COVID-19 en pacientes españoles con síndrome de Dravet y sus cuidadores: consecuencias del confinamiento.Introducción. La pandemia por COVID-19 implicó el estado de alarma en España en marzo de 2020. El abordaje necesario para el cuidado de los pacientes con síndrome de Dravet (SD) los convierte, junto con sus cuidadores, en un grupo vulnerable en situaciones de emergencia. Objetivos. Explorar el impacto de la pandemia por COVID-19 en el manejo y la condición de los pacientes españoles con SD, y de sus cuidadores y familias. Materiales y métodos. Análisis de los datos pertenecientes a familias españolas extraídos de una encuesta en línea europea (14 de abril-17 de mayo de 2020). Incluía datos de los pacientes con SD, de la enfermedad y de los cuidadores antes y después del confinamiento, durante el estado de alarma. Resultados. Participaron 69 familias españolas; edad media de los pacientes: 12,6 años. Excepto en el 19% de los casos que fueron aislados, las medidas de protección/aislamiento del paciente continuaron sin incrementar. La epilepsia se mantuvo estable, sin problemas de medicación ni disponibilidad de recursos/personal. Cambió el patrón de sueño/vigilia (61%) y la conducta (41%) de los pacientes. El cambio de conducta se asoció con las crisis durante el confinamiento y el estado anímico del cuidador (cambios en el 76%). Sólo se ofreció apoyo psicológico al 9% de los cuidadores. El 38% de los pacientes no recibió atención telemática. Conclusiones. La experiencia recogida durante el confinamiento ha permitido detectar puntos de mejora para asegurar el apropiado manejo del SD y mantener estable la situación de los pacientes y cuidadores, todo ello con un papel destacado de la telemedicina.

[Impact of confinement measures on the Covid-19 pandemic on alcohol risk consumption.]

OBJECTIVE: The public health strategies adopted for the containment of COVID-19 have generated psychosocial stressors that act as risk factors for alcohol consumption. The objectives of this study were to establish whether alcohol risk consumption varied during COVID-19 confinement, and how these variations manifested as a function of different sociodemographic variables. METHODS: The study was conducted during confinement with 3,779 participants in Spain. We used an online survey with sociodemographic variables (sex, age and employment situation) and AUDIT-C. Frequency and mean difference analysis were performed (Student t, ANOVA and Kruskal-Wallis) to establish intra-group variations before the pandemic compared to during confinement, and intergroup for each time period, reporting effect size. RESULTS: Alcohol risky consumption presented high prevalence rates before confinement (25,9% of alcohol consumers), showing a general decrease during confinement (15,1%), both in men (X²=224,829;p<0,001) and women (X²=214,324;p<0,001). Women had higher risk consumption rates both before the pandemic (X²=13,124;p<0,001;d=1,067) and during confinement (X²=26,316;p<0,001;d=2,85);however, men reported higher score in AUDIT-C before the pandemic (t₍₂₃₄₃₎=-7,887;p<0,001;d=0,322) and during confinement (t₍₂₃₄₃₎=-5,664;p<0,001;d=0,231). Considering age, significant differences in prevalence among groups were found before the pandemic (X²=22,889;p<0,001) and during confinement (X²=38,302;p<0,001), with the age range 18-24 showing less prevalence. Differences among age groups were also found in the risky consumption scores during confinement (F_(5,2338)=43,849;p=0,001), increasing with age. With regards to the employment situation, differences before the pandemic (KW_(5,2933)=13,467;p=0,019;E²_R=0,44), and during confinement (KW_(5,2933)=149,818;p<0,001;E²_R=0,51) were also found. Self-employed workers showed a higher score in alcohol risky consumption with respect to full-time employees (p=0,047). CONCLUSIONS: The alcohol risky consumption decreased in a generalized way during the confinement by COVID-19, but the changes in prevalence and risk index were dependent on sociodemographic variables. It is recommended that these findings are considered in the design of public health policies and strategies.