Table 1 Demographics
From: Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany
Percent or median (IQR) | Absolute number of patients | |
|---|---|---|
Age, y | 65 (17) | |
Sex, female | 39.7 | 62 |
BMI | 24.03 (5.12) | |
Type of health insurance (n = 150), statutory | 82.7 | 124 |
Symptom onset, y | 62 (17.8) | |
Disease duration from symptom onset, y | 2 (3) | |
Inherited ALS | 3.8 | 6 |
ALSFRS-R score (max. 48) | 30 (16) | |
King’s staging | ||
1 | 12.8 | 20 |
2 | 26.3 | 41 |
3 | 28.2 | 44 |
4A | 10.3 | 16 |
4B | 22.4 | 35 |
Level of care (n = 146) | ||
none | 24.7 | 36 |
1 | 2.1 | 3 |
2 | 11.6 | 17 |
3 | 28.1 | 41 |
4 | 17.1 | 25 |
5 | 16.4 | 24 |
Self-rated impairment in daily activities | 95.5 | 149 |
Permanent attendance of a caregiver necessary | 39.1 | 61 |
Main caregiver (n = 136) | ||
Partner | 86 | 117 |
Children | 7.4 | 10 |
Others | 6.6 | 9 |
Employment situation of the main caregiver (n = 119) | ||
Working caregiver | 47.1 | 56 |
Main caregiver stopped working because of patient’s ALS | 5 | 6 |
Change of weekly working time because of patient’s ALS | 14.3 | 17 |
Job change because of patient’s ALS | 2.5 | 3 |
Drop in salary because of patient’s ALS | 10.1 | 12 |
Housing situation (n = 152) | ||
Family | 87.5 | 133 |
Alone | 10.5 | 16 |
Assisted living/foster home | 2 | 3 |
Employment (n = 145) | ||
Employment no longer possible | 26.2 | 38 |
Working | 13.8 | 20 |
Retired, unemployed, homemaker | 60 | 87 |
Reasons for unemployability (n = 34) | ||
Retired because of ALS | 61.8 | 21 |
Unable to work | 5.9 | 2 |
Unknown | 32.4 | 11 |
EQ-VAS score (max. 100) | 40 (35) | |
EQ-5D-5L™ index value (max. 1) | 0.585 (0.623) | |