Skip to main content

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, y65 (17) 
Sex, female39.762
BMI24.03 (5.12) 
Type of health insurance (n = 150), statutory82.7124
Symptom onset, y62 (17.8) 
Disease duration from symptom onset, y2 (3) 
Inherited ALS3.86
ALSFRS-R score (max. 48)30 (16) 
King’s staging
 112.820
 226.341
 328.244
 4A10.316
 4B22.435
Level of care (n = 146)
 none24.736
 12.13
 211.617
 328.141
 417.125
 516.424
 Self-rated impairment in daily activities95.5149
 Permanent attendance of a caregiver necessary39.161
Main caregiver (n = 136)
 Partner86117
 Children7.410
 Others6.69
Employment situation of the main caregiver (n = 119)
 Working caregiver47.156
 Main caregiver stopped working because of patient’s ALS56
 Change of weekly working time because of patient’s ALS14.317
 Job change because of patient’s ALS2.53
Drop in salary because of patient’s ALS10.112
Housing situation (n = 152)
 Family87.5133
 Alone10.516
 Assisted living/foster home23
Employment (n = 145)
 Employment no longer possible26.238
 Working13.820
 Retired, unemployed, homemaker6087
Reasons for unemployability (n = 34)
 Retired because of ALS61.821
 Unable to work5.92
 Unknown32.411
 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)