Table 1 Characteristics of ALS Talk focus group participants
Characteristic | PwALS (n = 51) | Caregiver (n = 49) | Total (n = 100) | ||
|---|---|---|---|---|---|
Gender | |||||
 Female | 19 | 37% | 38 | 78% | 57 |
 Male | 31 | 61% | 8 | 16% | 39 |
 No response | 1 | 2% | 3 | 6% | 4 |
Province | |||||
 Alberta | 15 | 29% | 17 | 35% | 32 |
 British Columbia | 10 | 20% | 16 | 33% | 26 |
 Ontario | 17 | 33% | 16 | 33% | 33 |
 Quebec/New Brunswick/Nova Scotia | 9 | 18% | 0 | 0% | 9 |
Rural/Urban | |||||
 Rural or Small towna | 12 | 24% | 14 | 29% | 26 |
 Urban center | 38 | 75% | 33 | 67% | 71 |
 No response | 1 | 2% | 2 | 4% | 3 |
Age | |||||
 18–29 | 0 | 0% | 3 | 6% | 3 |
 30–39 | 1 | 2% | 3 | 6% | 4 |
 40–49 | 4 | 8% | 10 | 20% | 14 |
 50–59 | 10 | 20% | 15 | 31% | 25 |
 60–69 | 21 | 41% | 10 | 20% | 31 |
 70 +  | 14 | 27% | 5 | 10% | 19 |
 No response | 1 | 2% | 3 | 6% | 4 |
Educational level | |||||
 Completed graduate studies or MD | 9 | 18% | 10 | 20% | 19 |
 Completed undergraduate degree | 13 | 25% | 15 | 31% | 28 |
 Completed technical program or apprenticeship | 17 | 33% | 14 | 29% | 31 |
 Completed high school | 11 | 22% | 8 | 16% | 19 |
 No response | 1 | 2% | 2 | 4% | 3 |
Onset site (of self or family member with ALS) | |||||
 Limb | 34 | 67% | 31 | 63% | 65 |
 Bulbar | 10 | 20% | 8 | 16% | 18 |
 Don't know | 3 | 6% | 5 | 10% | 8 |
 Other | 2 | 4% | 2 | 4% | 4 |
 Prefer not to answer | 1 | 2% | 1 | 2% | 2 |
 No response | 1 | 2% | 2 | 4% | 3 |
Time since diagnosis (of self or family member with ALS) | |||||
 1 year | 9 | 18% | 11 | 22% | 20 |
 2 years | 15 | 29% | 12 | 24% | 27 |
 3 years | 11 | 22% | 9 | 18% | 20 |
 4 years | 5 | 10% | 8 | 16% | 13 |
 5 years | 4 | 8% | 3 | 6% | 7 |
 6 years | 2 | 4% | 1 | 2% | 3 |
 7 years | 1 | 2% | 1 | 2% | 2 |
 8 years | 0 | 0% | 1 | 2% | 1 |
 11 + years | 3 | 6% | 0 | 0% | 3 |
 Prefer not to answer | 0 | 0% | 1 | 2% | 1 |
 No response | 1 | 2% | 2 | 4% | 3 |