Table 1.
Demographic information of patients represented by respondents to the patient and family survey
| Characteristic | All patients (N = 194) |
|---|---|
| Diagnosis | |
| Juvenile dermatomyositis, N (%) | 189 (97) |
| Juvenile polymyositis, N (%) | 5 (3) |
| Respondenta | |
| Parent, N (%) | 168 (87) |
| Grandparent, N (%) | 10 (5) |
| Aunt/Uncle, N (%) | 2 (1) |
| Female, N (%) | 140 (72) |
| Ethnicity, N (%) | |
| Caucasian/White | 150 (77) |
| Hispanic/Latino | 10 (5) |
| African American/Black | 11 (6) |
| Asian/Pacific Islander | 2 (1) |
| American Indian/Alaskan Native | 1 (0.5) |
| Multiple Ethnicity | 18 (9) |
| Prefer not to answer | 1 (1) |
| Time to diagnosis (months): mean (range) | 6.7 (1–40) |
| Functional disability when disease at worst | |
| Significant impact, N (%) | 145 (75%) |
| Intermediate impact, N (%) | 24 (12%) |
| Functional disability in prior two weeks | |
| Minimal or no impact, N (%) | 131 (69%) |
| Significant impact, N (%) | 19 (10%) |
aTotal less than 100%: 14 (7%) of respondents skipped question