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%) |