Huntington’s disease patients and families facing COVID-19 emergency in Italy

ABSTRACT

BackgroundThe coronavirus disease 2019 (COVID-19) pandemic could be a condition of increased vulnerability for patients and families with Huntington’s disease (HD). Social isolation with loss of the usual support system may worsen the chronic assistance burden and, if protracted, may exhacerbate the risk of distress and mental suffering.MethodA telephone structured survey was conducted between April 1st and April 15th 2020 , and we report the survey data on the impact of the COVID-19 pandemic outbreak in eighty consecutive HD patients and their families in Italy during the first wave of the pandemic .ResultsOut of 80 HD patients, apparently no patient had contact with COVID-19 positive cases, no one directly linked with the virus nor swab confirmed infection, even if flu-like symptomatology was experienced in first trimester 2020, with fever reported by 8,7% and cough/sore throat by 27,3%. Only one performed the swab test with a negative result. Regarding disease management during the pandemic outbreak, five individuals needed urgent neurological care, fourteen suspended physiotherapies, seven individuals reported subjective worsening of neurological symptoms. The three patients living in nursing homes were reported being healthy and safe isolation measures were promptly adopted by the structures in order to protect residents from external contacts. Compliance with hospital decision to stop activities and openness to the proposal of telemedicine was shown. No worrying signs of crisis or distress related to social restriction rules worsening caregiving burden were evident.ConclusionsIn general, an excellent attitude to cope with the emergency and social restrictions was observed in HD Italian families during the COVID-19 first pandemic wave, we can imagine that they used previously adopted adaptive solutions to cope with this lockdown.Telemedicine will be implemented in the post pandemic and HD families seems to be ready to benefit.