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

From: Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs

Characteristic Parents with ALS (N = 8) Well parents (N = 13) Children (N = 15)
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
  1. Note. ALS, amyotrophic lateral sclerosis; PLS, primary lateral sclerosis; PMA, progressive muscular atrophy. aYears since diagnosis at time of interview. Adds to less than 100% for well parents and children because 2 parents with ALS deceased prior to the interview. bStepchildren were also included in the count. cAdds to more than 100% for well parents due to rounding