Table 1 Demographic and illness-related characteristics (N = 36)

Gender, n (%)

Male

6 (75.0)

3 (23.1)

5 (33.4)

Female

2 (25.0)

10 (76.9)

10 (66.6)

Age, years

Mean (SD)

48.9 (7.5)

47.8 (8.4)

17.1 (3.5)

Range

38–57

36–66

13–23

Age at diagnosis, years

Mean (SD)

46.1 (7.1)

44.3 (8.9)

11.7 (6.2)

Range

35–54

33–64

1–20

Diagnosis, n (%)

ALS

6 (75.0)

12 (92.3)

12 (80)

PMA

1 (12.5)

–

–

PLS

1 (12.5)

1 (7.7)

3 (20)

Years since diagnosis, n (%)^a

 < 1 year

2 (25.0)

1 (7.7)

1 (6.7)

1–2 years

2 (25.0)

3 (23.1)

1 (6.7)

2–3 years

2 (25.0)

2 (15.4)

2 (13.3)

3–4 years

–

1 (7.7)

–

4–5 years

1 (12.5)

3 (23.1)

4 (26.7)

 ≥ 5 years

1 (12.5)

1 (7.7)

5 (33.3)

Children in family, n (%)^b,c

1

1 (12.5)

2 (15.4)

1 (6.7)

2

3 (37.5)

6 (46.2)

5 (33.3)

 ≥ 3

4 (50.0)

5 (38.5)

9 (60.0)

Age children, years

Mean (SD)

15.5 (7.4)

15.3 (6.8)

–

Range

2–27

1–27

–