Table 1.
Demographic and Health Characteristics of Adults with Congenital Heart Defects by Disability Status: CH STRONG, 2016–2019
| Characteristic | ≥1 Disability | No disabilities | Have ≥1 disability: no disabilities | ||||
|---|---|---|---|---|---|---|---|
| n | % |
Standardized* % (95% CI) |
n | % |
Standardized* % (95% CI) |
aOR (95% CI) |
|
| CHD severity † , ‡ | |||||||
| Severe | 216 | 42.5 |
45.0 (40.6–49.5) |
292 | 57.5 |
55.0 (50.5–59.4) |
1.4 (1.1–1.8) |
| Nonsevere | 352 | 36.3 |
37.5 (34.4–40.7) |
618 | 63.7 |
62.5 (59.3–65.6) |
Ref |
| Last visit with a cardiologist † , ‡ | |||||||
| ≤2 y | 312 | 45.0 |
46.4 (42.3–50.5) |
382 | 55.0 |
53.6 (49.5–57.7) |
1.6 (1.2–2.0) |
| >2 y or never | 256 | 32.7 |
35.0 (31.7–38.4) |
528 | 67.3 |
65.0 (61.6–68.3) |
Ref |
| Age at survey completion (y) † , ‡ | |||||||
| 19–24 | 252 | 39.4 |
37.6 (33.8–41.6) |
388 | 60.6 |
62.4 (58.4–66.2) |
Ref |
| 25–30 | 217 | 36.5 |
36.1 (31.5–41.0) |
377 | 63.5 |
63.9 (59–68.5) |
0.9 (0.7–1.1) |
| 31–38 | 99 | 40.6 |
42.6 (36.4–49.0) |
145 | 59.4 |
57.4 (51.0–63.6) |
1.3 (0.9–1.8) |
| Sex † , ‡ | |||||||
| Female | 334 | 41.8 |
42.4 (38.9–46.0) |
466 | 58.3 |
57.6 (54.0–61.1) |
1.6 (1.3–2.0) |
| Male | 234 | 34.5 |
37.0 (33.4–40.8) |
444 | 65.5 |
63.0 (59.2–66.6) |
Ref |
| Maternal race and ethnicity † , ‡ | |||||||
| Hispanic | 48 | 44.0 |
41.2 (29.5–54.0) |
61 | 56.0 |
58.8 (46.0–70.5) |
1.2 (0.7–1.8) |
| NH Black | 88 | 44.9 |
41.3 (36.8–46.0) |
108 | 55.1 |
58.7 (54.0–63.2) |
1.6 (1.1–2.2) |
| NH White | 418 | 37.0 |
36.3 (33.4–39.2) |
713 | 63.0 |
63.7 (60.8–66.6) |
Ref |
| Other ¶ | 14 | 33.3 |
38.8 (34.0–43.8) |
28 | 66.7 |
61.2 (56.2–66.0) |
0.8 (0.4–1.6) |
| Noncardiac congenital anomaly † | |||||||
| Yes | 297 | 59.8 |
60.3 (55.8–64.7) |
200 | 40.2 |
39.7 (35.3–44.2) |
2.5 (2.0–3.3) |
| No | 271 | 27.6 |
27.5 (24.7–30.5) |
710 | 72.4 |
72.5 (69.5–75.3) |
Ref |
| Noncardiac birth defects † , § | |||||||
| Yes | 170 | 48.4 |
49.2 (44.0–54.3) |
181 | 51.6 |
50.8 (45.7–56.0) |
14.0 (8.5–23.1) |
| No | 398 | 35.3 |
36.1 (33.3–39.0) |
729 | 64.7 |
63.9 (61.0–66.7) |
Ref |
| Chromosomal anomalies † | |||||||
| Yes | 127 | 87.0 |
86.3 (81.0–90.3) |
19 | 13.0 |
13.7 (9.7–19.0) |
8.4 (6.1–11.6) |
| No | 441 | 33.1 |
34.6 (32.0–37.2) |
891 | 66.9 |
65.4 (62.8–68.0) |
Ref |
| Down syndrome † | |||||||
| Yes | 111 | 88.8 |
87.2 (81.7–91.3) |
14 | 11.2 |
12.8 (8.7–18.3) |
4.0 (3.2–5.1) |
| No | 457 | 33.8 |
35.4 (32.8–38.0) |
896 | 66.2 |
64.6 (62.0–67.2) |
Ref |
| Survey completed by a proxy † | |||||||
| Yes | 210 | 75.8 |
76.3 (71.2–80.8) |
67 | 24.2 |
23.7 (19.2–28.8) |
16.3 (9.2–29.1) |
| No | 358 | 29.8 |
30.8 (28.3–33.5) |
843 | 70.2 |
69.2 (66.5–71.7) |
Ref |
aOR indicates adjusted odds ratio; CHD, congenital heart defect; CH STRONG, Congenital Heart Survey to Recognize Outcomes, Needs, and Well‐Being; and NH, non‐Hispanic.
Standardized to the CH STRONG eligible sample (n=9312 individuals with CHD in birth defect registries who were not deceased or incarcerated at time of survey) by site, sex, race and ethnicity, birth year, and CHD severity.
Adjusted for CHD severity, age, sex, maternal/race ethnicity, and site.
Model additionally adjusted for noncardiac congenital anomalies.
Model additionally adjusted for chromosomal anomalies.
Other includes non‐Hispanic American Indian or Alaska Native and non‐Hispanic Asian or Pacific Islander.