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Table 1 The characteristics of study sample

From: Why is misdiagnosis more likely among some people with rare diseases than others? Insights from a population-based cross-sectional study in China

  Overall Adult Non-adult
  N % N % N %
Sex       
 Male 1093 53.6 492 45.2 581 63.3
 Female 947 46.4 597 54.8 337 36.7
Education       
 No education    47 4.3 34* 6.7
 Primary and secondary    312 28.7 172* 33.8
 Senior    248 22.8 175* 34.4
 College and above    482 44.3 128* 25.1
Disease rarity levela       
 Mildly rare 396 19.9 86 7.8 38 4.3
 Moderately rare 1466 73.8 828 75.3 638 72.0
 Extremely rare 124 6.2 186 16.9 210 23.7
Hukoub       
 Urban 1061 52.2 609 56.1 432 47.3
 Rural 970 47.8 477 43.9 481 52.7
Economic developed areac       
 Develop area 898 44.0 483 44.4 402 43.8
 Underdeveloped area 1142 56.0 606 55.6 516 56.2
Have been misdiagnosed       
 Yes 1310 66.1 755 72.2 534 59.1
 No 671 33.9 290 27.8 370 40.9
Insuranced       
 Free medical care    42 4.7   
 Urban employee Medical insurance    359 40.4   
 Urban resident medical insurance    130 14.6   
 New rural cooperative medical care    357 40.2   
Difficult level to access information       
 A little difficult 462 23.3 269 25.6 187 20.7
 Some difficult 769 38.7 416 39.7 337 37.2
 Very difficult 755 38.0 364 34.7 381 42.1
Have complication       
 Yes 773 70.0 433 69.3 340 70.8
 No 332 30.0 192 30.7 140 29.2
Perceived economical level as compared to localse       
 Below average 1342 66.9 698 64.1 644 70.2
 Close to average 597 29.7 353 32.4 244 26.6
 Above average 68 3.4 38 3.5 30 3.3
  Mean SD Mean SD Mean SD
Age 22.46 17.13 36.08 10.77 6.37 4.68
Length of time to be diagnosedf 2.26 4.81 3.46 6.08 0.83 1.91
Family sizeg 2.73 1.14 3.27 0.87 2.08 1.08
  1. *The patient’s fraternal educational level
  2. aThe classification of rare disease was listed in the Additional file 1: Appendix
  3. bHukou is a system of household registration in mainland China. A household registration record officially identifies a person as a resident of an area. Currently there are two categories of Hukou system: urban registration and rural registration
  4. cThe developed areas included Beijing, Tianjin, Hebei, Shandong, Shanghai, Jiangsu, Zhejiang, Fujian, Guangdong, Hainan, Hong Kong SAR and Macau SAR
  5. The underdeveloped areas included Chonqing, Sichuan, Hubei, Hunan, Anhui, Jiangxi, Shaanxi, Gansu, Ningxia, Shanxi, Yunnan, Guizhou, Guangxi, Jilin, Liaoning, Heilongjiang, Inner Mongolia, Tibet, Xinjiang and Qinghai
  6. dFree medical care only provides to civil servants
  7. ePerceived economic level is determined by the respondent’s self-assessment of their monthly family income. It is measured by a likert scale from 1–5. If the respondents think his/her family income is about the same as average level in the places where they live, they will choose 3; whereas 1–2 means lower than average local income level, and 4–5 means higher than average level
  8. fLength of time from symptom onset to an accurate diagnosis (years)
  9. gNumber of many family members living under the same roof