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Table 4 Mean annual burden of illness of Duchenne muscular dystrophy in € (min-max)

From: Comparative cost of illness analysis and assessment of health care burden of Duchenne and Becker muscular dystrophies in Germany

  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
  1. Total burden of illness of DMD consisting of total direct medical and non-medical costs and indirect costs was calculated per-patient in € per year while taking disease progression into account. Because of rounding, percentage might not add up to exactly 100%.