Table 4 Mean annual burden of illness of Duchenne muscular dystrophy in € (min-max)
Mean | Ratio of total COI [%] | Clinical severity stage | |||||
|---|---|---|---|---|---|---|---|
I | II | III | IV | V | |||
Outpatient medical costs | 457 (0-4,644) | 1% | 279 (0-3,046) | 393 (0-4,644) | 701 (0-2,973) | 552 (0-4,356) | 523 (0-2,495) |
Inpatient medical costs | 1,613 (0-131,454) | 2% | 585 (0-18,736) | 804 (0-20,188) | - | 1,540 (0-35,525) | 6,673 (0-131,454) |
Rehabilitation program costs (in-/outpatient) | 1,130 (0-30,053) | 1% | - | 427 (0-17,017) | 2,780 (0-15,290) | 2,086 (0-30,053) | 954 (0-15,290) |
Drug treatment costs | 330 (0-5,530) | <1% | 172 (0-967) | 373 (0-3,837) | 344 (0-746) | 319 (0-5,530) | 550 (0-5,122) |
Costs of rehabilitation services (e.g. physiotherapy) | 4,732 (0-31,974) | 6% | 2,693 (0-10,658) | 4,042 (0-31,974) | 5,204 (0-18,097) | 5,817 (0-24,657) | 6,478 (0-26,839) |
Costs of medical aids | 10,209 (0-103,977) | 13% | 488 (0-4,368) | 1,584 (0-11,450) | 2,474 (1,285-4,805) | 11,153 (0-82,673) | 51,019 (1,342-103,977) |
Costs of respiratory management | 875 (0-12,087) | 1% | 3 (0-34) | 6 (0-34) | 163 (0-1,791) | 1,522 (0-12,087) | 2,771 (0-6,779) |
Total direct medical costs | 19, 346 | 25% | 4, 220 | 7, 629 | 11, 666 | 22, 989 | 68, 968 |
Costs for the housing situation | 4,043 (0-238,800) | 5% | 55 (0-1,536) | 83 (0-2,280) | 1,064 (0-6,900) | 5,860 (0-192,000) | 17,112 (0-238,800) |
Costs for personal assistance for school and work attendance | 883 (0-28,800) | 1% | - | 931 (0-15,000) | 1,980 (0-9,600) | 1,481 (0-28,800) | - |
Travel expenses | 1,102 (0-17,376) | 1% | 358 (0-1,479) | 741 (0-5,434) | 1,814 (108-7,264) | 1,714 (0-17,376) | 915 (0-3,950) |
Advocate support costs | 27 (0-8,333) | <1% | 1 (0-33) | 118 (0-8,333) | 0 (0-89) | 0 (0-1,623) | 0 (0-59) |
Investments in house adaptions | 3,059 (0-93,636) | 4% | 2,826 (0-66,667) | 0 (0-30,507) | 2,239 (0-12,421) | 8,499 (0-93,636) | 0 (0-13,853) |
Investments in automobile adaptions | 408 (0-16,697) | 1% | 62 (0-2,833) | 559 (0-11,605) | 2,609 (0-12,028) | 776 (0-16,697) | 0 (0-6,941) |
Other expenditures (e.g. artificial nutrition, alternative therapies) | 83 (0-12,000) | <1% | 41 (0-1,536) | 223 (0-12,000) | - | 14 (0-735) | 510 (0-6,720) |
Informal care costs | 21,279 (0-223,380) | 27% | 8,303 (0-77,563) | 8,029 (0-62,050) | 19,532 (3,103-43,435) | 31,490 (0-223,380) | 44,443 (0-158,848) |
Total direct non-medical costs | 30, 884 | 39% | 11, 646 | 10, 684 | 29, 238 | 49, 834 | 62, 980 |
Total direct COI | 50, 230 | 64% | 15, 866 | 18, 313 | 40, 904 | 72, 823 | 131, 948 |
Indirect costs caused by patients | 21,463 (0-43,740) | 27% | - | 11,100 (11,100-11,100) | - | 18,734 (0-43,740) | 28,529 (881-43,740) |
Indirect costs caused by parents | 7,220 (0-324,000) | 9% | 13,078 (0-324,000) | 3,855 (0-24,000) | 8,046 (0-18,000) | 7,044 (0-45,100) | 4,378 (0-12,000) |
Total indirect COI | 28, 683 | 36% | 13, 078 | 14, 955 | 8, 046 | 25, 778 | 32, 907 |
Total COI | 78, 913 | 28, 944 | 33, 268 | 48, 950 | 98, 601 | 164, 855 | |