Characteristics of caregivers and patients
| Caregivers (n=74) | ||
|---|---|---|
| Age | ||
| Mean | 55.7 (SD 12.82) | |
| Range | 25–76 years | |
| Sex | ||
| Male | 23 | 31.1% |
| Female | 51 | 68.9% |
| Relationship to the patient | ||
| Spouse/partner | 53 | 71.6% |
| Son/daughter | 15 | 20.3% |
| Parent | 2 | 2.7% |
| Sibling | 3 | 4.1% |
| Friend | 1 | 1.4% |
| Lives with patient | ||
| Yes | 60 | 81.1% |
| No | 14 | 18.9% |
| Principal economic status | ||
| Working for payment or profit | 32 | 43.2% |
| Unemployed | 4 | 5.4% |
| Looking after family/home | 16 | 21.6% |
| Retired | 19 | 25.7% |
| Unable to work due to permanent sickness or disability | 3 | 4.1% |
| In general, would you say your health is | ||
| Excellent | 14 | 18.9% |
| Very good | 20 | 27.0% |
| Good | 26 | 35.1% |
| Fair | 9 | 12.2% |
| Poor | 5 | 6.8% |
| Do you have any long-term illness, health problems or disability? | ||
| Yes | 39 | 52.7% |
| No | 35 | 47.3% |
| Patients (n=74) | ||
| Age | ||
| Mean | 65.16 (SD 9.74) | |
| Range | 43–87 years | |
| Sex | ||
| Male | 45 | 60.8% |
| Female | 29 | 39.2% |
| Site of onset | ||
| Bulbar | 21 | 28.4% |
| Spinal | 51 | 68.9% |
| Thoracic/respiratory | 2 | 2.7% |
| Time from symptom onset to diagnosis | ||
| Mean (months) | 15.72 (SD 11.04) | |
| Range | 1–56 months | |
| Median | 12 | |
| IQR | 8–22 | |