Table 1.
Evaluation of the impact of COVID-19 on ALS disease management and daily life
| Questionnaire | ALS patients | Caregivers | Between group differences |
|---|---|---|---|
| (A) Perceived risk of COVID-19 (index score)a | − 0.254 (1.5) | 0.285 (1.8) | n.s |
| (1) How much are you able to avoid COVID-19?b | 4.00 (0.8; range 3–5) | 3.78 (1.2; range 1–5) | n.s |
| (2) Amount of information sources on COVID-19 (min 0; max 8) | 3.53 (1.3; range 1–6) | .18 (1.5; range 1–6) | n.s |
| (3) # actions taken to avoid SARS-Cov-2 contagion (min 0–max 9) | 8.16 (1.0; range 4–9) | 8.44 (0.8; range 6–9) | n.s |
| (B) Concern about COVID-19 | |||
| (1) Worries in the event of an infection b | 3.53 (1.4; range 1–5) | 3.21 (1.6; range 1–5) | n.s |
| (2) Thinking of COVID-19b | 3.10 (1.2; range 1–5) | 2.96 (1.2; range 1–5) | n.s |
| (3) Thinking that COVID-19 can worry my familyb | 3.70 (0.9; range 2–5) | 3.50 (1.3; range 1–5) | n.s |
| (C) Change in disease management | |||
| (1) Drug management changeb | 1.30 (0.9; range 1–5) | n.a | – |
| (2) Change in neurologist-patient relationshipb | 1.96 (1.4; range 1–5) | n.a | – |
| (3) Feelings of being forgotten/rejected by cliniciansb | 1.46 (0.8; range 1–4) | n.a | – |
| (4) Concern about negative consequences of COVID-19 healthy emergency on the management of the disease by cliniciansb | 2.65 (1.3; range 1–5) | n.a | – |
| (D) Change in habits due to COVID-19 state of emergency | |||
| (1) Out-of-home habitsb | 3.56 (1.4; range 1–5) | 3.79 (1.2; range 1–5) | n.s |
| (2) Household habitsb | 1.90 (1.2; range 1–5) | 2.21 (1.2; range 1–5) | n.s |
| (3) Use of social networksb | 2.23 (1.5; range 1–5) | 2.38 (1.3; range 1–5) | n.s |
| (4) Work/Retirementb | 2.83 (1.5; range 1–5) | 2.62 (1.8; range 1–5) | n.s |
| (5) Personal care b | 2.03 (0.9; range 1–5) | 1.93 (1.3 range 1–5) | n.s |
| (E) Change in behaviour due to COVID-19 state of emergency | |||
| (1) Irritable/Nervousb | 1.66 (1.1; range 1–5) | 1.78 (0.8; range 1–4) | n.s |
| (2) Agitated/Anxiousb | 1.50 (0.7 range 1–4) | 1.78 (0.9; range 1–5) | n.s |
| (3) Sad/Depressedb | 1.46 (0.7; range 1–3) | 1.60 (0.8; range 1–4) | n.s |
| (4) Boredb | 1.89 (1.1; range 1–4) | 2.03 (1.0; range 1–4) | n.s |
| (5) Increased consumption of alcohol/cigarettesb | 1.13 (0.5; range 1–4) | 1.25 (0.6; range 1–4) | n.s |
| (6) Increased food consumptionb | 1.46 (0.8; range 1–4) | 1.64 (0.9 range 1–5) | n.s |
Data are expressed as means (± standard deviation; range min–max)
n.a. not available data, n.s. not significant difference
aThe perceived risk index was calculated summing z standard scores of the A(1–3) responses
bThe range of responses varied from 1 (not at all) to 5 (extremely)