Table 3.
Breakdown of direct healthcare cost, direct non-healthcare cost, indirect cost, and total cost of RDs in pediatric and adult patients.
| Average annual cost per patient |
||||
|---|---|---|---|---|
| All patients (n = 284) | ≤18 years old (n = 88) | >18 years old (n = 196) | P-value | |
| Direct healthcare costs | ||||
| Health services | 84,883 | 157,127 | 52,446 | 0.004 |
| Medications | 96,505 | 163,791 | 66,296 | 0.170 |
| Medical resources and consumables | 1386 | 2132 | 1051 | 0.004 |
| Community medical services | 4392 | 6867 | 3281 | 0.357 |
| Total direct healthcare costs | 187,166 | 329,917 | 123,074 | 0.013 |
| Direct non-healthcare costs | ||||
| Professional care | 14,879 | 18,949 | 13,052 | 0.906 |
| Informal care | 128,158 | 259,823 | 69,043 | <0.001 |
| Special education and employment services | 31,876 | 87,292 | 6995 | <0.001 |
| Residential or foster care placements | 8052 | 13,860 | 5445 | 0.055 |
| Home modification | 550 | 480 | 581 | 0.529 |
| Transportation | 10,040 | 12,044 | 9139 | 0.259 |
| Total direct non-healthcare costs | 193,555 | 392,449 | 104,255 | <0.001 |
| Indirect costs | ||||
| Productivity loss by RD patient: | 32,126 | 0 | 46,550 | <0.001 |
| Loss due to forced retirement/unemployment | 27,211 | 0 | 39,429 | <0.001 |
| Absenteeism (reduced working hours and days) | 4915 | 0 | 7122 | 0.011 |
| Productivity loss by caregiver: | 70,055 | 115,135 | 49,815 | <0.001 |
| Loss due to forced retirement/unemployment | 43,538 | 70,255 | 31,543 | 0.001 |
| Absenteeism (reduced working hours and days) | 26,517 | 44,880 | 18,272 | 0.003 |
| Health services utilized by patient's family member(s) | 1354 | 3408 | 433 | 0.012 |
| Total indirect costs | 103,535 | 118,543 | 96,797 | 0.168 |
| Grand total ($, SD) | 484,256 (730,736) | 840,908 (954,250) | 324,126 (534,329) | <0.001 |
RD rare disease.