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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)
  1. AMC academic medical center, IPQR Illness Perception Questionairre Revised, SDS self-rating depression scale