Table 2.
Direct healthcare cost, direct non-healthcare cost, indirect cost, and total cost of RDs per patient per year ($–Hong Kong Dollars).
| Characteristics | Number of patients (%) | Direct healthcare cost | Direct non-healthcare cost | Indirect cost | Total cost |
|---|---|---|---|---|---|
| Gender | |||||
| Male | 134 (47.2) | 127,621 | 210,801 | 116,810 | 455,231 |
| Female | 150 (52.8) | 240,360 | 178,148 | 91,676 | 510,184 |
| Agea | |||||
| ≤18 | 88 (31.0) | 329,917 | 392,449 | 118,543 | 840,908 |
| 19–64 | 185 (65.1) | 123,962 | 104,710 | 96,426 | 325,097 |
| ≥65 | 11 (3.9) | 108,138 | 96,608 | 103,048 | 307,794 |
| RD categoryb | |||||
| Rare bone disease | 17 (6.0) | 216,929 | 303,596 | 50,251 | 570,776 |
| Rare developmental defects during embryogenesis | 67 (23.6) | 73,075 | 282,246 | 109,041 | 464,362 |
| Rare endocrine disease | 4 (1.4) | 68,544 | 46,857 | 94,300 | 209,701 |
| Rare eye disease | 4 (1.4) | 5213 | 154,110 | 221,919 | 381,242 |
| Rare gastroenterologic disease | 2 (0.7) | 276,888 | 221,711 | 220,800 | 719,399 |
| Rare hematologic disease | 9 (3.2) | 1,090,333 | 102,200 | 120,043 | 1,312,576 |
| Rare immune disease | 6 (2.1) | 18,251 | 37,038 | 0 | 55,288 |
| Rare inborn errors of metabolism | 31 (10.9) | 407,449 | 307,496 | 103,143 | 818,088 |
| Rare neoplastic disease | 3 (1.1) | 41,967 | 291,610 | 58,904 | 392,481 |
| Rare neurologic disease | 107 (37.7) | 173,922 | 155,423 | 120,769 | 450,115 |
| Rare respiratory disease | 8 (2.8) | 144,185 | 40,334 | 132,972 | 317,491 |
| Rare skin disease | 4 (1.4) | 30,618 | 3570 | 66,433 | 100,620 |
| Rare systemic or rheumatologic disease | 24 (8.5) | 51,799 | 49,862 | 45,260 | 146,921 |
| Number of other family members with RD(s)a | |||||
| 0 | 201 (70.8) | 230,907 | 210,838 | 104,782 | 546,401 |
| 1 | 35 (12.3) | 52,236 | 188,323 | 110,474 | 351,033 |
| 2 | 16 (5.6) | 30,665 | 42,458 | 129,775 | 202,899 |
| 3 | 6 (2.1) | 94,156 | 114,156 | 79,377 | 287,689 |
| 4 | 8 (2.8) | 42,972 | 226,089 | 59,038 | 328,099 |
| ≥5 | 7 (2.4) | 25,271 | 57,743 | 3301 | 86,315 |
| Years since being diagnoseda | |||||
| 0–5 | 103 (36.3) | 313,185 | 243,165 | 117,683 | 674,033 |
| 6–10 | 34 (12.0) | 97,006 | 233,794 | 120,481 | 451,281 |
| 11–15 | 30 (10.6) | 252,646 | 174,904 | 115,724 | 543,274 |
| 16–20 | 28 (9.9) | 66,699 | 158,208 | 103,973 | 328,880 |
| 21–25 | 26 (9.2) | 50,491 | 175,795 | 87,449 | 313,735 |
| 26–30 | 13 (4.6) | 58,489 | 133,630 | 64,087 | 256,207 |
| >30 | 13 (4.6) | 56,933 | 125,887 | 92,554 | 275,373 |
| Education/employment statusa | |||||
| Student | 88 (31.0) | 206,242 | 375,534 | 100,653 | 682,429 |
| Full time employment | 49 (17.3) | 131,464 | 42,052 | 39,629 | 213,145 |
| Part time employment | 14 (4.9) | 398,611 | 53,596 | 59,224 | 511,431 |
| Housewife/househusband | 16 (5.6) | 50,151 | 79,124 | 138,257 | 267,532 |
| Retired | 25 (8.8) | 71,595 | 57,455 | 134,407 | 263,456 |
| Not in education/unemployed | 70 (24.6) | 266,202 | 192,088 | 156,230 | 614,520 |
| Social security support/Governmental allowance(s) received by patientc | |||||
| Received social security support/Governmental allowance | 174 (61.3) | 253,822 | 234,517 | 125,590 | 613,929 |
| Did not receive any social security support/Governmental allowance | 110 (38.7) | 81,727 | 128,760 | 68,650 | 279,136 |
| Total (range) | 284 (100.0) | 187,166 (0–6,043,952) | 193,555 (0–1,024,224) | 103,535 (0–450,158) | 484,256 (2920–6,161,275) |
RD rare disease.
a
There are missing data in this variable.
b
Seven patients are suffering from two different RDs.
c
27 patients received social security support/governmental allowance from more than one schemes.