The effects of COVID-19 pandemic countermeasures on patients receiving botulinum toxin therapy and on their caregivers: a study from an Italian cohort

COVID-19 outbreak had a huge worldwide impact, and several countermeasures to contain its spread have been adopted, such as the interruption of nonurgent outpatient clinics. We wanted to describe the effects of the national lockdown on the well-being of a cohort of Italian patients with cerebral palsy (CP) receiving botulinum toxin (BT) therapy and of their caregivers. Twenty-five patients receiving BT therapy were surveyed using the structuralized questionnaire by Dressler and Adib Saberi, while the caregivers were assessed using the Caregiver Burden Scale. The lockdown delayed BT therapy by 9 ± 2.8 months. Around 44% of the selected patients noticed increased muscle cramps, 24% increased muscle pain, and 32% both of them. Due to the lockdown, the patient’s quality of life was reduced by 68.4 ± 21.1%. After the lockdown, 100% of patients perceived BT therapy as more important than before. Around 76% of the patients perceived the lockdown as inadequate and felt that their rights were not respected. The overall score of the Caregiver Burden Scale, as regarded before the lockdown, was 29.12 ± 11.63, while the overall score as regarded after the lockdown was 37.44 ± 14.85. The overall score increased, from before the lockdown to after the lockdown, for 92% of caregivers. The BT outpatient clinic’s interruption was seen to significantly worsen the psychophysical condition of subjects with CP and the care burden of their caregivers, exposing them to greater stress than before. Therefore, any kind of BT treatment suspension or delay should be avoided.