Children with heart conditions often use more health care services and specialized care
than children without a heart condition (
Heart conditions in children can be congenital or acquired and range from asymptomatic to
life-threatening. Congenital heart defects (CHDs) are the most common type of birth
defect in the United States, affecting approximately 1% of live births (
NSCH is a population-based, nationally representative survey of parents or primary
caregivers (parents) of noninstitutionalized U.S. children aged 0–17 years.
Parents were asked if they had ever been told by a health care provider that their child
had a heart condition. Those who responded affirmatively were asked if their child
currently had a heart condition. Children’s heart condition status was
categorized as “current,” “past,” or “none.”
Parents were also asked about their child’s special health care needs using a
standardized five-item screener that included 1) need for or use of medications (other
than vitamins) prescribed by a doctor; 2) need for or use of medical care, mental
health, or educational services beyond those of a similarly aged child (referred to as
“average use”); 3) limitation in the child’s ability to do things
most children of the same age can do; 4) need for or use of specialized therapies such
as physical, occupational, or speech therapy; and 5) need for or receipt of treatment or
counseling for an emotional, behavioral, or developmental problem. If any special health
care need was attributable to a medical, behavioral, or other health condition that had
lasted, or was expected to last, 12 months or longer, the child was considered to have a
special health care need. The questionnaire also inquired about 26 other health
conditions.
The numbers and percentages of children with current, past, and no heart conditions were calculated. Chi-square tests were used to examine the differences in demographic characteristics (sex, age, race/ethnicity, family income as a percentage of the federal poverty level [FPL], highest parental education level achieved, health insurance type, and household structure); other health conditions; and special health care needs, by heart condition status. Marginal prediction approach to logistic regression was used to assess the association between heart condition status and one or more special health care needs, adjusted for demographic characteristics. Among children with a current heart condition, characteristics associated with having one or more special health care needs also were examined. All analyses were repeated excluding children with Down syndrome or other genetic conditions because these children’s heart conditions might be related to the syndromes. All analyses included design parameters to account for complex sampling and weights to generate population-based estimates of the numbers and prevalences of children with and without heart conditions.
Among the 50,212 children in the sample, 1,733 (3.5%) were excluded from analysis because of missing information, including heart condition status (180), special health care needs (309), and demographic characteristics (1,244). Excluded children were more commonly nonwhite, not privately insured, and living in households with lower income, lower parental education level, and other than two parents than were children who were not excluded (p<0.05 for all). After weighting the data to represent the U.S. population of children 0–17 years, an estimated 900,000 U.S. children (1.3% of U.S. children; 95% confidence interval [CI] = 1.1–1.5) had a current heart condition, 755,000 children (1.1%; 95% CI = 0.9–1.3) had a past heart condition, and 68.1 million children (97.6%; 95% CI = 97.3–97.9) had no heart condition.
Among children with current heart conditions, 58.3% were male, 55.7% were non-Hispanic
white, 21.5% had family income <100% of FPL, 64.8% had at least one parent with
higher than a high school education, 72.3% lived in a two-parent household, and 55.4%
had private health insurance (
| Characteristic | Heart
condition status | Chi- square p value | |||||
|---|---|---|---|---|---|---|---|
| Current | Past | None | |||||
| Unweighted no. | Weighted % (95% CI) | Unweighted no. | Weighted % (95% CI) | Unweighted no. | Weighted % (95% CI) | ||
| Male | 356 | 58.3 (50.0–66.1) | 267 | 53.5 (42.6–64.1) | 24,189 | 50.8 (49.8–51.8) | 0.17 |
| Female | 278 | 41.7 (33.9–50.0) | 231 | 46.5 (35.9–57.4) | 23,158 | 49.2 (48.2–50.2) | |
| 0–5 | 185 | 28.9 (22.9–35.7) | 136 | 27.9 (20.5–36.7) | 13,717 | 32.4 (31.5–33.4) | 0.16 |
| 6–11 | 194 | 44.0 (35.9–52.4) | 144 | 32.7 (23.2–43.7) | 14,139 | 33.9 (32.9–34.9) | |
| 12–17 | 255 | 27.1 (21.6–33.5) | 218 | 39.5 (29.1–50.9) | 19,491 | 33.7 (32.8–34.6) | |
| White, non-Hispanic | 455 | 55.7 (47.3–63.8) | 356 | 52.0 (41.0–62.8) | 33,510 | 52.5 (51.5–53.6) | 0.75 |
| Other* | 179 | 44.3 (36.2–52.7) | 142 | 48.0 (37.2–59.0) | 13,837 | 47.5 (46.4–48.5) | |
| <100% | 72 | 21.5 (15.5–28.9) | 58 | 28.7 (17.6–43.3) | 4,309 | 20.5 (19.5–21.5) | 0.28 |
| 100%–199% | 112 | 27.4 (19.6–36.8) | 81 | 19.4 (13.2–27.6) | 7,375 | 21.9 (21.0–22.9) | |
| 200%–399% | 208 | 27.4 (21.8–33.9) | 169 | 27.6 (20.6–36.0) | 14,693 | 27.2 (26.3–28.0) | |
| ≥400% | 242 | 23.7 (18.7–29.7) | 190 | 24.2 (17.6–32.3) | 20,970 | 30.4 (29.6–31.2) | |
| High school graduate or
less | 107 | 35.2 (26.9–44.6) | 77 | 29.3 (19.9–40.9) | 6,772 | 28.4 (27.3–29.6) | 0.38 |
| More than high school | 527 | 64.8 (55.4–73.1) | 421 | 70.7 (59.1–80.1) | 40,575 | 71.6 (70.4–72.7) | |
| Two parents | 503 | 72.3 (65.1–78.5) | 393 | 77.6 (69.6–83.9) | 38,606 | 75.8 (74.9–76.7) | 0.54 |
| Other | 131 | 27.7 (21.5–34.9) | 105 | 22.4 (16.1–30.4) | 8,741 | 24.2 (23.3–25.1) | |
| Any private | 459 | 55.4 (47.0–63.5) | 354 | 50.7 (39.9–61.5) | 36,679 | 61.6 (60.5–62.6) | 0.10 |
| Public, unspecified, or uninsured | 173 | 44.6 (36.5–53.0) | 141 | 49.3 (38.5–60.1) | 10,544 | 38.4 (37.4–39.5) | |
* Includes Hispanic, non-Hispanic black, American Indian/Alaska Native, Native Hawaiian or Other Pacific Islander, and Asian.
† Based on the U.S. Department of Health and Human Services Poverty Guidelines.
§ Highest education level among two parents or child's primary caregivers.
¶ 129 had missing information on insurance type.
Sixty percent of children with current heart conditions and 40.0% with past heart
conditions had one or more special health care needs, compared with 18.7% of children
without a heart condition (
| Special health care needs | Heart
condition status | ||||
|---|---|---|---|---|---|
| Current | Past | None | |||
| % (95% CI) | aPR* (95% CI) | % (95% CI) | aPR* (95% CI) | % (95% CI) | |
| Has one or more special health
care needs | 60.0 (51.6–67.8) | 3.1 (2.7–3.6) | 40.0 (29.9–50.9) | 2.1 (1.6–2.7) | 18.7 (18.0–19.5) |
| Needs or uses prescription
medicines | 42.8 (35.3–50.7) | 3.0 (2.5–3.6) | 26.6 (17.5–38.1) | 1.9 (1.3–2.8) | 13.8 (13.2–14.5) |
| Above average use of health care
or educational services§ | 41.8 (34.5–49.4) | 4.2 (3.5–5.1) | 23.9 (17.2–32.2) | 2.4 (1.8–3.3) | 9.5 (9.0–10.1) |
| Has functional
limitations | 30.7 (24.3–38.0) | 6.3 (5.0–8.1) | 17.4 (11.5–25.5) | 3.7 (2.4–5.6) | 4.6 (4.1–5.0) |
| Needs or uses physical,
occupational, or speech therapies | 22.4 (16.9–29.0) | 4.3 (3.2–5.7) | 14.4 (9.2–21.8) | 2.9 (1.8–4.6) | 4.7 (4.3–5.2) |
| Needs or receives treatment or counseling for emotional, developmental or behavioral conditions | 23.4 (17.8–30.0) | 2.7 (2.1–3.5) | 22.5 (15.9–30.9) | 2.7 (1.9–3.8) | 8.0 (7.5–8.5) |
* Prevalence ratio of special health care needs for current and past heart conditions versus no heart condition, adjusted for sex, age group, race/ethnicity, family income as a percentage of the federal poverty level, parental education level, and household structure.
§ Beyond those of a similarly aged child.
Among children with current heart conditions, an increased prevalence of special health
care needs was observed among males (aPR = 1.3; 95%
CI = 1.1–1.7), children with family income <100% of FPL
(aPR = 1.4; 95% CI = 1.0–2.0), and children living in
other than a two-parent household (aPR = 1.3; 95% CI
= 1.0–1.6) (
| Characteristic | One or more special health
care needs | aPR* (95% CI) |
|---|---|---|
| Weighted % (95% CI) | ||
| Male | 68.9 (60.5–76.3) | 1.3 (1.1–1.7) |
| Female | 47.4 (34.5–60.7) | Referent |
| 0–5 | 57.8 (45.9–68.9) | Referent |
| 6–11 | 58.5 (42.7–72.7) | 1.0 (0.7–1.2) |
| 12–17 | 64.4 (53.4–74.4) | 1.1 (0.9–1.3) |
| White, non-Hispanic | 62.4 (54.6–69.7) | Referent |
| Other† | 56.8 (41.3–71.1) | 0.9 (0.7–1.1) |
| <100% | 80.5 (67.3–89.3) | 1.4 (1.0–2.0) |
| 100%–199% | 52.8 (32.6–72.2) | 1.0 (0.7–1.5) |
| 200%–399% | 59.5 (47.8–70.2) | 1.1 (0.9–1.5) |
| ≥400% | 50.1 (38.5–61.7) | Referent |
| High school graduate or
less | 62.0 (41.6–78.9) | 1.0 (0.8–1.3) |
| More than high school | 58.8 (51.6–65.7) | Referent |
| Two parents | 54.2 (44.2–63.8) | Referent |
| Other | 75.1 (63.3–84.0) | 1.3 (1.0–1.6) |
* Prevalence ratios adjusted for sex, age group, race/ethnicity, family income, parental education level, and household structure.
† Includes Hispanic, non-Hispanic black, American Indian/Alaska Native, Native Hawaiian or Other Pacific Islander, and Asian.
§ Based on the U.S. Department of Health and Human Services Poverty Guidelines.
¶ Highest education level among two parents or child's primary caregivers.
According to the 2016 NSCH, 1.3% and 1.1% of U.S. children had a current or past
heart condition, respectively. Because the specific types of heart conditions were
unknown (i.e., congenital versus acquired), comparing current findings with
published estimates of CHDs or acquired heart conditions is difficult. The birth
prevalence of CHDs is nearly 1%, and approximately 1 million U.S. children have CHDs
(
Children with CHDs are at increased risk for developmental disabilities and speech,
motor, behavior, or learning problems (
Similar to the present findings among children with CHDs, male sex, lower family
income, and other than two-parent household structure have been associated with
special health care needs in the general pediatric population (
The findings in this report are subject to at least five limitations. First, data are
parent-reported and unconfirmed by medical records; however, according to findings
from a study that used medical records to verify parental report of a diagnosis of
autism (
These first population-based prevalence estimates of children with heart conditions
and their special health care needs highlight the importance of guidelines for
developmental surveillance and screening for early identification and intervention
(
Children with heart conditions often need specialized care. Little is known about the number of U.S. children living with heart conditions and their special health care needs.
In 2016, 1.3% of U.S. children had a current heart condition, and 1.1% had a past heart condition. Children with past and current heart conditions had higher prevalences of one or more special health care needs, compared with children without heart conditions.
These findings highlight the importance of developmental surveillance and screening among children with heart conditions for early identification and intervention and could inform public health resource planning.
Karrie F. Downing.
Allergies, anxiety problems, arthritis, asthma, attention deficit disorder/attention deficit hyperactivity disorder, autism spectrum disorder, behavioral/conduct problems, blood disorders, brain injury, cerebral palsy, cystic fibrosis, depression, developmental delay, diabetes, Down syndrome, epilepsy/seizure disorder, headaches/migraines, hearing impairment, learning disability, mental retardation/intellectual disability, other genetic/inherited conditions, other mental health conditions, speech/language disorder, substance abuse, Tourette syndrome, and vision impairment.
All authors have completed and submitted the ICMJE form for disclosure of potential conflicts of interest. No potential conflicts of interest were disclosed.