Table 2. Difficulty receiving needed specialist care among children with genetic disease/conditions vs. variables of interest, NSCH, ^a 2020 (n = 833).

	Difficulty in receiving specialist careb		No/slight difficulty in receiving specialist care		p-value
	Number	weighted %, CI	Number	weighted %, CI
Sex					0.0058
Female	27	5.5, 1.0–10.2	372	94.5, 89.8–99.1
Male	47	18.2, 9.2–27.1	387	81.8, 72.9–90.8
Race					0.5980
White alone	57	12.4, 5.8–19.0	628	87.6, 81.0–94.2
Black alone	csc	15.0, 3.0–27.0	36	85.0, 73.0–97.0
Other	cs	6.4, 0–13.0	95	93.6, 87.0–100
Age in years					0.2623
<6	19	8.3, 1.2–15.4	163	91.7, 84.6–98.8
6 to <13	31	15.9, 4.6–27.2	274	84.1, 72.8–95.4
13 to <18	24	9.4, 7.0–11.9	322	90.6, 88.1–93.0
Birth more than 3 weeks before due date					0.1098
Yes	16	21.3, 1.4–41.2	107	78.7, 58.8–98.6
No	56	9.1, 5.6–12.7	635	90.9, 87.3–94.4
Birth weight <2500 grams					0.5676
Yes	15	16.2, 1.6–30.8	83	83.8, 69.2–98.4
No	55	12.0, 5.9–18.0	655	88.0, 82.0–94.1
Newborn genetic screening determination of genetic condition					0.0049
Yes	cs	4.0, 1.0–7.0	cs	96.0, 93.0–99.4
No	66	13.3, 7.0–19.6	639	86.7, 80.4–93.0

^aNational Survey of Children’s Health.

^bThe question that was posed was “How difficult was it to get the specialist care that this child needed?” posed to parents/guardians of children who needed care. Responses “not difficult” and “somewhat difficult” were recoded as “no/slight difficulty.” Responses “very difficult” and “it was not possible to obtain care” were recoded as “difficulty.”

^ccs = cells in the row are suppressed if one of the categories had values <10.

Boldface indicates statistical significance (p<0.05).