Skip to main content

Table 2 Characteristics of people with ALS and their care partners at baseline

From: The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study

PEOPLE WITH ALS (N = 31)
Sex
 Male 22 71.0%
 Female 9 29.0%
Age (years)
 Mean (SD) 65.7 (9.3)  
 Range 44–80  
Ethnic background
 White 24 77.4%
 Asian 4 12.9%
 Aboriginal 1 3.2%
 Black 1 3.2%
Age of symptom onset (years)
 Mean (SD) 62.3 (9.5)  
 Range 42–78  
Time from diagnosis to baseline (months)
 Mean (SD) 28.9 (33.6)  
 Range 2–120  
Measures and Scales Mean St Dev Range
 ALSFRS-R 31.5 7.0 8–44
 ECAS (total) 101.6 14.6 61–121
 ECAS (ALS-specific) 80.3 12.1 46–97
 ECAS (ALS non-specific) 21.3 4.3 13–30
CARE PARTNERS (N = 31)
Sex
 Male 9 29.0%
 Female 22 71.0%
Age (years)
 Mean 64.1 (SD 10.2)  
 Range 42–81  
Ethnicity
 White 28 90.3%
 Asian 3 9.7%
Currently employed
 Yes 7 22.6%
 No 24 77.4%
Hours of care provided per week
 Mean 65.3  
 Range 0–168  
Receiving caregiving assistance
 Formal (i.e., paid caregiver) 7 22.6%
 Informal (i.e., friends or extended family) 13 42.0%
  1. ALSFRS-R Revised Amyotrophic Lateral Sclerosis Functional Rating Scale, ECAS Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis Screen