Impact of the COVID‐19 lockdown on patients and families with Dravet syndrome

Abstract

We explored the impact of coronavirus virus 2019 (COVID‐19) pandemic on patients with Dravet syndrome (DS) and their family. With European patient advocacy groups (PAGs), we developed an online survey in 10 languages to question health status, behavior, personal protection, and health services before and after lockdown. Approximately 538 European PAG members received electronic invitations. Survey ran from April 14, to May 17, 2020, with 219 answers; median age 9 year 10 months. Protection against infection was highly used prior to COVID‐19, but 88% added facemask‐use according to pandemic recommendations. Only one patient was tested positive for COVID‐19. Most had stable epilepsy during lockdown, and few families (4%) needed emergency care during lockdown. However, behavior disorder worsened in over one‐third of patients, regardless of epilepsy changes. Half of appointments scheduled prior to lockdown were postponed; 12 patients (11%) had appointments fulfilled; and 39 (36%) had remote consultations. Responders welcomed remote consultations. Half of responders were unsatisfied with psychological remote support as only few (21 families) received this support. None of the five of patient in clinical trials stopped investigational treatment. Prior adoption of protective measures against general infection might have contributed to avoiding COVID‐19 infections. Protocols for the favored remote contact ought to now be prepared.

The impact of lockdown on young people with genetic neurodevelopmental disabilities: a study with the international participatory database GenIDA

“…Individuals with behavioural problems in both periods exhibited more severe disorders during lockdown, including more pronounced aggressivity, self-aggressivity, depressiveness, stereotypies, and restricted interests than in the pre-lockdown period. These results echoed past studies that showed higher behavioural problems during lockdown in developmental and ID [ 10 , 33 , 34 ], Down Syndrome [ 12 ], Prader-Willi Syndrome [ 22 ], Fragile X [ 21 ] and Dravet Syndrome [ 35 ]. Depression in people with ID often presents atypically, with agitation and irritability rather than a sad mood [ 36 , 37 ].…”

COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

“…The implications of disruption to these medications may have significant consequences. Cessation of anti-seizure medication, for example, may contribute to the increased seizure frequency during the pandemic ( Brambilla et al, 2021 ; Trivisano et al, 2020 ) and drug withdrawal is a risk factor for status epilepticus, which may be fatal ( Nair et al ., 2011 ). It is not only those with IDD who experienced challenges in accessing healthcare, however, as the present study found that family members supporting persons with IDD also avoided healthcare.…”

Impact of COVID-19 pandemic on physical and mental health status and care of adults with epilepsy in Germany

“…arthritis or diabetes, which is referable to the loss of resources due to the pandemic [ 28 , 29 ]. In addition to that, patients with physical and mental disabilities, like those suffering from developmental and epileptic encephalopathies, and their caregivers might be even more affected by the pandemic [ 30 , 31 ].…”