Table 2.

Patient demographics: Family status, education, employment status and patient care levels

	Patients			Parents
	I	II	III	I	II	III
Family status [%]
Widowed	-	0	1	-	2	-
Divorced	-	0	11	-	6	11
Married	-	5	33	75	75	78
In a partnership	-	18	9	17	16	11
Unmarried	-	77	46	8	2	-
Education [%]
No qualification	-	-	3	-	2	4
School	-	73	63	75	62	70
University	-	27	35	25	36	26
Completed professional training	-	60	79	92	92	85
Employment status [%]
Non-working	-	52	26	-	6	7
Currently working
Self-employed	-	-	4	18	4	-
Employed	-	38	49	27	60	74
Reduced working time	-	13	21	100	58	10
Quit working life	-	10	21	55	29	19
Care levels [%]a
No care level	20	1	37	-	-	-
Care level 1	10	12	20	-	-	-
Care level 2	20	27	31	-	-	-
Care level 3	50	59	13	-	-	-
Gross salary per year [€, mean (SD)]	-	28,496 (22,218)	38,437 (23,055)	22,813 (14,182)	28,359 (21,015)	35,347 (27,417)

These demographic parameters served as a basis for the indirect cost calculation of patients and their parents. The classification into care levels (level 1–3) represents the individual classification within the German health care system; a higher number indicates greater needs (^acare level 1: at least 90 min/day of which at least 45 min account for basic care needs (personal hygiene, feeding, mobility); care level 2: at least 3 h/day of which at least 2 h account for basic care needs; care level 3: at least 5 h/day of which at least 4 h account for basic care needs [36]). Patients/parents collated in the category ‘quit working life’ quit their working lives due to the disease. Those who are ‘non-working’ additionally represent pensioners, trainees and students. Data is presented as % or mean (SD). Lines indicate not applicable answers. Because of rounding, percentages might not add up to exactly 100 %