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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)  
  1. This table shows the most important patient characteristics, their disease stage (King’s staging), and the impairment in their autonomy and working lives. The professional activity assessment of patients and of their main caregivers served as basis for the calculation of indirect costs
  2. Abbreviations: IQR interquartile range, y years, BMI body mass index, n number, ALS amyotrophic lateral sclerosis, ALSFRS-R Revised Amyotrophic Lateral Sclerosis Functional Rating Scale, EQ-VAS score Self-rated health on the visual analogue scale of EuroQol Group EQ-5D-5LTM instrument. health on a visual analogue scale (0–100)