Table 1 Participant characteristics (n = 154)
From: Validating online approaches for rare disease research using latent class mixture modeling
Males (n = 99) | Females (n = 55) | Total (n = 154) | |
|---|---|---|---|
Sociodemographics | |||
Age (years) Mean ± SD (range) | 36.8 ± 10.8 (19–65) | 35.2 ± 9.7 (18–68) | 36.2 ± 10.5 (18–68) |
Education (n, %) | |||
High school | 33 (33%) | 10 (18%) | 43 (28%) |
University | 35 (35%) | 16 (29%) | 51 (33%) |
Post-graduate | 31 (31%) | 29 (53%) | 60 (39%) |
Not reported | 0 | 1 (< 1%) | 1 (< 1%) |
Relationship status (n, %) | |||
Never been in a relationship | 23 (23%) | 4 (7%) | 27 (18%) |
Single | 24 (24%) | 9 (16%) | 33 (21%) |
Dating/in a relationship | 15 (15%) | 14 (25%) | 29 (19%) |
Married | 36 (36%) | 21 (38%) | 57 (37%) |
Divorced | 1 (1%) | 7 (13%) | 8 (5%) |
Clinical information | |||
Age at diagnosis (years) Mean ± SD (range) | 17.7 ± 5.9 (neonatal—32) | 20.7 ± 7.4 (10–48) | 18.8 ± 6.6 (neonatal—48) |
Seen at AMC (n, %) | 50 (51%) | 34 (62%) | 84 (55%) |
Genetic counseling ever (n, %) | 12 (12%) | 11 (20%) | 33 (21%) |
Genetic testing ever (n, %) | 42 (42%) | 25 (45%) | 67 (44%) |
Patient-reported outcomes | |||
IPQR consequences (dimension range 5–30) | 21.2 ± 4.0 (10–30) | 20.0 ± 5.1 (6–30) | 20.8 ± 4.5 (6–30) |
IPQR emotional representations (dimension range 5–30) | 19.3 ± 5.7 (6–30) | 17.8 ± 6.2 (6–30) | 18.8 ± 5.9 (6–30) |
IPQR illness coherence (dimension range 5–25) | 18.2 ± 4.4 (6–25) | 16.4 ± 4.7 (5–25) | 17.6 ± 4.6 (5–25) |
Zung SDS (dimension range 20–80) | 43.5 ± 12.0 (20–70) | 41.6 ± 11.4 (22–68) | 42.8 ± 11.8 (20–70) |