Background and Aims:

The two-month lockdown period during COVID-19 pandemic had a general impact on health treatments and care assistance. We wanted to assess Quality of life (QoL) of ALS patients and the burden of their caregivers during that period.

Methods:

60 patients and 59 caregivers, visited in telemedicine during March 2020, underwent the assessment of patients’ QoL (McGill QoL Questionnaire), general health status (EQ-5D-5L) and caregiver burden (Zarit Burden Interview [ZBI]). These phone scales were administered in April 2020 (T1) and repeated one month after the end of lockdown (T2), with the addition of a qualitative questionnaire (COVID-QoL-Questionnaire), exploring family reorganization and personal perception of lockdown.

Wilcoxon signed-rank test and the chi-squared test were used.

Results:

QoL and perceived health status did not worsen during lockdown, while caregiver burden increased (p=0.01). Patient’s QoL and caregiver burden were mildly inversely correlated at T1 (p<0.05, rho=-0.265); no significant correlations were found at T2. According to the COVID-QoL-Questionnaire, both patients and caregivers were able to consult their physicians while at home (60% and 66.1% respectively). Moreover, caregivers perceived lower family help compared to patients (p<0.001).

Conclusions:

In our cohort of ALS patients, QoL and caregiver burden were not compromised by restriction measures during COVID-19 pandemic, while caregiver burden significantly increased. Probably, this is due to the motor impairment in ALS patients, which did not perceive changing in life conditions. Instead, the reported increased burden for primary caregivers could be explained by the restriction of family help, reflecting the importance of a wide social support in ALS patients’ management.