Table 1 Demographics of the RD sample
M (SD; range) | Frequency (%) | |
|---|---|---|
Age of person with RD | 40.90 years (21.82; 1–90) | |
RD status | ||
Adult with RD | 787 (70%) | |
Relative or caregiver of a person with a RD | 76 (7%) | |
Parent of a child with a RD | 252 (22%) | |
Other (e.g., friend; both a person with a RD and a parent to child(ren) with RD) | 11 (1%) | |
Gender of person with RD | ||
Female | 752 (67%) | |
Male | 365 (32%) | |
Something else | 10 (1%) | |
Race of person with RD | ||
American Indian or Alaska Native | 9 (< 1%) | |
Asian or Asian American | 20 (2%) | |
Black or African American | 19 (2%) | |
Hispanic or Latinx | 28 (3%) | |
Middle Eastern | 6 (< 1%) | |
Mixed Race | 15 (1%) | |
Native Hawaiian or Pacific Islander | 2 (< 1%) | |
White or Caucasian | 1007 (89%) | |
Other | 16 (1%) | |
Education of person with RD | ||
Some high school or less | 99 (10%) | |
High school diploma or GED | 81 (8%) | |
Some college | 149 (15%) | |
Associate’s degree technical degree | 124 (13%) | |
Bachelor’s degree | 221 (23%) | |
Some graduate school | 59 (6%) | |
Graduate degree | 236 (24%) | |
Household income of person with RD | ||
Under $20,000 | 157 (16%) | |
$20,000–39,999 | 139 (14%) | |
$40,000–59,999 | 122 (12%) | |
$60,000–79,999 | 106 (10%) | |
$80,000–99,999 | 112 (11%) | |
Over $100,000 | 253 (25%) | |
Number of RDs | ||
1 | 995 (88%) | |
2 | 98 (9%) | |
3 | 25 (2%) | |
4 | 6 (< 1%) | |
5 | 4 (< 1%) | |
RD course | ||
Stable | 304 (34%) | |
Progressive | 399 (44%) | |
Episodic | 199 (22%) | |
Improving | 6 (< 1%) | |
Diagnostic delay | ||
0–6 months | 293 (30%) | |
7–11 months | 82 (9%) | |
1–3 years | 224 (23%) | |
4–6 years | 106 (11%) | |
7–9 years | 54 (6%) | |
10 + years | 158 (16%) | |
Still undiagnosed | 27 (3%) | |
Number of doctors seen to get a diagnosis | ||
1 | 152 (16%) | |
2–3 | 360 (38%) | |
4–5 | 231 (24%) | |
6–10 | 123 (13%) | |
11–15 | 31 (3%) | |
More than 15 | 43 (5%) |