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Table 3 Cost of illness (COI) per patient for SMA [in €/y]

From: Disease burden of spinal muscular atrophy in Germany

 

Mean

Ratio of total COI [%]

SMA subtype

I

II

III

Outpatient medical costs

331 (579)

0 %

463 (455)

392 (496)

274 (640)

Inpatient medical costs

5,634 (24,193)

8 %

39,972 (81,057)

4,454 (11,892)

2,488 (10,730)

Rehabilitation costs (in-/outpatient)

822 (3,535)

1 %

594 (2,059)

971 (3,901)

745 (3,423)

Drug treatment costs

189 (527)

0 %

389 (1,232)

245 (563)

126 (334)

Costs for use of rehabilitation services

2,050 (2,094)

3 %

3,488 (4,734)

2,149 (1,641)

1,814 (1,849)

Costs for artificial nutrition

243 (1,157)

0 %

1,940 (3,351)

247 (1,139)

90 (573)

Costs for medical aids

3,451 (2,450)

5 %

1,648 (1,628)

4,385 (2,133)

3,003 (2,508)

Costs for respiratory management

1,678 (2,760)

2 %

5,698 (5,882)

2,548 (2,280)

594 (1,713)

Total direct medical COI

14,342 (26,379)

20 %

53,707 (81,809)

15,305 (14,220)

9,125 (14,330)

Costs for housing

12,854 (38,639)

18 %

10,160 (26,569)

20,001 (50,000)

8,173 (29,107)

Costs for personal assistance for school and work attendance

2,162 (6,694)

3 %

0

4,301 (9,513)

958 (3,794)

Travel expenses

2,800 (6,637)

4 %

2,068 (1,866)

2,040 (2,525)

3,424 (8,661)

Informal care costs

20,170 (28,924)

29 %

31,542 (22,541)

28,571 (35,107)

12,902 (22,173)

Costs for legal advice

9 (37)

0 %

0

12 (37)

8 (39)

Costs for constructional modifications to house

1,860 (3,408)

3 %

833 (2,887)

2,882 (4,511)

1,254 (2,133)

Costs for constructional modifications to automobile

1,116 (2,577)

2 %

1,455 (4,824)

1,751 (3,252)

601 (1,193)

Other expenditures

129 (782)

0 %

20 (69)

110 (847)

156 (783)

Total direct non-medical COI

40,378 (47,464)

58 %

45,957 (39,044)

58,607 (54,214)

26,940 (38,381)

Total direct COI

54,721 (59,210)

78 %

99,664 (104,071)

73,911 (60,597)

36,064 (42,753)

Indirect cost patients

20,275 (22,857)

29 %

0

17,016 (18,782)

20,906 (23,645)

Indirect cost parents

13,204 (17,264)

19 %

13,959 (11,582)

19,034 (19,891)

4,195 (9,637)

Total indirect COI

15,845 (20,067)

22 %

8,143 (11,173)

16,356 (18,971)

16,376 (21,511)

Total COI

70,566 (62,725)

100 %

107,807 (102,082)

90,267 (65,467)

52,440 (48,000)

  1. Data presented as mean (SD) in 2013 in € per year. Because of rounding, percentages might not add up to exactly 100 %. Costs for housing include e.g. professional care, domestic aids; other expenditures comprise patient-reported data for expenditures such as for special clothes for wheelchair users, podologic care etc.