Supplement Table 1.
Description and descriptive statistics of dependent and independent variables (n=982)
| Independent variable | Sample size, n (%) | Description |
|---|---|---|
| Individual characteristics | ||
| Gender | ||
| Male (reference) | 593 (60.39) | = 0 if male |
| Female | 389 (39.61) | = 1 if female |
| Age | ||
| 0–20 years (reference) | 581 (59.16) | |
| 21–30 years | 156 (15.89) | = 1 if 21–30, = 0 otherwise |
| 31–40 years | 139 (14.15) | = 1 if 31–40, = 0 otherwise |
| 41–50 years | 66 (6.72) | = 1 if 41–50, = 0 otherwise |
| ≥51 years | 40 (4.07) | = 1 if ≥51, = 0 otherwise |
| Marital status | ||
| Unmarried (reference) | 758 (77.19) | = 0 if unmarried |
| Married | 224 (22.81) | = 1 if married |
| Education status | ||
| Primary school or below (reference) | 550 (56.01) | |
| Junior and senior school | 224 (22.81) | = 1 if junior or senior school, = 0 if otherwise |
| College degree or above | 208 (21.18) | = 1 if college degree or above, = 0 if otherwise |
| School/employment status | ||
| Student and preschool children (reference) | 539 (54.89) | |
| Employed and unemployed with employability | 215 (21.89) | = 1 if employed or unemployed with employability, = 0 if otherwise |
| Employment inability and retired | 228 (23.22) | = 1 if employment inability or retired, = 0 if otherwise |
| Medical insurance | ||
| No health insurance (reference) | 112 (11.41) | |
| UEBMI | 196 (19.96) | = 1 if UEBMI, = 0 otherwise |
| URBMI | 251 (25.56) | = 1 if URBMI, = 0 otherwise |
| NRCMS | 411 (41.85) | = 1 if NRCMS, = 0 otherwise |
| Government insurance | 12 (1.22) | = 1 if government insurance, = 0 otherwise |
| Severity of disease | ||
| Needing long-term treatment (reference) | 896 (91.24) | = 0 if needing long-term treatment |
| No needing long-term treatment | 86 (8.76) | = 1 if no needing long-term treatment |
| Provincial hospital for diagnosis or not | ||
| No (reference) | 202 (20.57) | = 0 if no |
| Yes | 780 (79.43) | = 1 if yes |
| Municipal hospital for diagnosis or not | ||
| No (reference) | 797 (81.16) | = 0 if no |
| Yes | 185 (18.84) | = 1 if yes |
| Outpatient visit or not | ||
| No (reference) | 524 (53.36) | = 0 if no |
| Yes | 458 (46.64) | = 1 if yes |
| Hospitalization or not | ||
| No (reference) | 617 (62.83) | = 0 if no |
| Yes | 365 (37.17) | = 1 if yes |
| Health status | ||
| Good or excellent (reference) | 130 (13.24) | |
| Fair | 371 (37.78) | = 1 if fair, = 0 otherwise |
| Poor or terrible | 481 (48.98) | = 1 if poor or terrible, = 0 otherwise |
| Household characteristics | ||
| Income level (based on annual household income) | ||
| Lowest 20% (reference) | 197 (20.06) | |
| Lower 20% | 196 (19.96) | = 1 if lower 20, = 0 otherwise |
| Middle 20% | 196 (19.96) | = 1 if middle 20, = 0 otherwise |
| Richer 20% | 196 (19.96) | = 1 if richer 20, = 0 otherwise |
| Richest 20% | 197 (20.06) | = 1 if richest 20, = 0 otherwise |
| Education status of household head | ||
| Primary school or below (reference) | 149 (15.17) | Reference |
| Junior and senior school | 492 (50.1) | = 1 if junior or senior school, = 0 if otherwise |
| College degree or above | 341 (34.73) | = 1 if college degree or above, = 0 if otherwise |
| Household size (capita) | ||
| 1–3 (reference) | 392 (39.92) | |
| 4–5 | 465 (47.35) | = 1 if 4–5, = 0 if otherwise |
| ≥6 | 125 (12.73) | = 1 if≥6, = 0 if otherwise |
| Household living status | ||
| Below the minimum living standard (reference) | 182 (18.53) | = 0 if below the minimum living standard |
| Above the minimum living standard | 800 (81.47) | = 1 if above the minimum living standard |
| Regional characteristics | ||
| Urban (reference) | 579 (58.96) | = 0 if urban |
| Rural | 403 (41.04) | = 1 if rural |
| Dependent variables | Expenditure (RMB Yuan), median (IQR) | Description |
| Y1: Total health expenditure for rare disease in 2014 | 20,000 (33,500) | Incurred when seeking care through self-medication or going for health services |
| Y2: OOP health expenditure for rare disease in 2014 | 17,000 (24,000) | Total health expenditure net of any reimbursement |
UEBMI: Urban Employee Basic Medical Insurance; URBMI: Urban Resident Basic Medical Insurance; NRCMS: New Rural Cooperative Medical Scheme; OOP: Out-of-pocket; IQR: Interquartile range.