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.

Background and Aims:

Psychological status has already been related to clinical outcome in ALS, as well as in other neurological disease, without considering the specific role of anxiety and depression.

Methods:

We collected all Hospital Anxiety and Depression scale (HADS) questionnaires administered to patients at diagnosis from 2008 to 2018 in the Turin ALS Centre during a full neuropsychological evaluation. We analyzed the frequency of both anxiety and depression in ALS patients, their association to clinical features and their prognostic role, adjusting for different motor and cognitive confounders, using Cox proportional hazard models and Kaplan-Maier curves.

Results:

Data from 569 patients were collected. HADS-A and HADS-D scores showed moderate correlation (0.485, p<0.001). HADS Severity scores are showed in Figure 1.

Depression was significantly correlated to age, total ALSFRS-R score and cognitive impairment, while anxiety showed only a minimal correlation to ALSFRS-R score (-0.108, p=0.022). Cox proportional hazard model showed that HADS-A was related to overall survival, but not HADS-D (HADS-A: HR 1.040, CI 1.012-1.069, p=0.005; HADS-D: HR 1.013, CI 0.976-1.052, p=0.497). The best discriminating cut-off for both HADS-A was 6 (HR HADS-A>6 1.453, CI 1.151-1.835, p=0.002; log-rank test p=0.012, see Figure 2 for KM curves).

Interestingly, HADS-D raw scores resulted to be prognostic only in patients with comorbid anxiety (Figure 3).

Conclusions:

Anxiety is more frequent than depression in ALS patients at diagnosis and, unlike depression, seems not to be related to motor and cognitive features and to disease duration. Anxiety is also an independent prognostic factor, similarly to what happens in other non-neurological disease.