What Gets Measured Gets Done: Using Data to Improve Child Health and Well-Being

August 19, 2020|1:45 p.m.| Reem Ghandour, DrPH, MPA

Reem Ghandour, DrPH, MPAAs policy makers, program directors, health care providers, educators, researchers, and families, we know the intrinsic value of optimizing the health of our country’s youngest members. Most of us can also agree that monitoring the health and well-being of our nation’s infants, children, and adolescents is an important component to maximizing health across the lifespan—we have to know what’s affecting these populations in order to improve and meet both our short—and long-term health goals as a nation. It is critical that we can closely track trends in children’s health over time, and to explore data across subpopulations to identify disparities. These data sets help assess the health impacts of emerging threats, such as the COVID-19 pandemic, and longstanding challenges, such as systemic racism.

However, monitoring is only as good as the measures we track and the data we collect. We need valid, reliable, and timely data on a wide range of indicators to see the full picture of the health and well-being of children in our states and across the nation. But which measures are most important? Compelling? Actionable? And how can we tell a more complete story about our children and families?

The adage “what gets measured, gets done” has had staying power for a reason. When we can accurately describe conditions, quantify impact, and elucidate connections, we have a better chance at taking collective (and effective) action to tackle even the most challenging problems facing our communities. The National Survey of Children’s Health (NSCH), funded and directed by the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB), is a powerful tool to provide this critical information to researchers, policymakers, and state-level decision makers.

MCHB partners with the U.S. Census Bureau to field the survey using both web-based and paper-and-pencil questionnaires. The survey is an annual, cross-sectional, address-based survey that collects information from parents/caregivers on the physical, emotional, and behavioral health and well-being of children ages 0-17 years in the U.S. This includes questions on a wide range of factors that can influence children’s health—from the prevalence and impact of special health care needs, to health care quality and access, to adverse childhood experiences. The NSCH is the only source of both national- and state-level data on several key measures of infant, child, and adolescent health and development.

The NSCH is fielded from approximately June to January each year, with data publicly released in early October. For many indicators, multiple years of data can be combined to increase sample sizes, which is especially useful for producing state-level estimates or looking at numerically small subpopulations. As of 2020, states also have the option of purchasing oversamples to produce sub-state estimates or augment their capacity to look at smaller subpopulations.

Key estimates from the combined 2017-2018 NSCH provide a snapshot of the kinds of analyses that are possible at the state and national levels, and highlight opportunities to engage in data-driven decision making using this annual resource:

  • In 2017-2018, of over 20 current or lifelong conditions included in the NSCH, allergies were the most commonly reported health condition among children (18.7 percent), followed by ADHD (8.7 percent), and asthma (7.6 percent). Eight of the 12 most frequently reported conditions were mental, behavioral, or developmental conditions.
  • Adverse childhood experiences (ACEs) are stressful or traumatic events that occur during childhood and are strongly related to a wide range of health problems throughout a person’s lifetime. In 2017-2018, one in three children ages 0-17 (33.3 percent) had experienced at least one ACE, and 14 percent had experienced two or more ACEs. Reports of ACEs varied significantly by family income: A larger percentage of children in households with incomes below 100 percent of the federal poverty level (FPL) experienced two or more ACEs compared with children in households with incomes at or above 400 percent of the FPL (22 percent vs. 7.3 percent).
  • The American Academy of Pediatrics defines a medical home as a model of primary health care that is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective. Less than half (48 percent) of all children ages 0-17 had a medical home in 2017-2018.
  • Children with special health care needs (CSHCN) are defined as those who “have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” In 2017-2018, approximately 13.6 million children in the U.S. (18.5 percent) had a special health care need. One in four households (nearly 25 percent) in the U.S. had one or more CSHCN.
  • Universal developmental screening is recommended before the age of three to support early identification of developmental delays and disabilities. In 2017-2018, about 1 in 3 U.S. children (33.5 percent), ages 9 through 35 months, received a parent-completed developmental screening from a health care professional in the past year. Rates varied widely across states: Compared to the U.S. overall, Minnesota (58.5 percent), Oregon (55.6 percent), Connecticut (53 percent), Colorado (50.5 percent), and Georgia (49.4 percent) had significantly higher rates.

NSCH data is publicly available and updated annually. Micro data files can be downloaded directly from the U.S. Census Bureau and analyzed using statistical software. Additionally, a user-defined web-based data query is available to generate national, regional, and state-level estimates for most indicators by a range of sociodemographic characteristics.

We encourage you to explore the topics covered in the NSCH through topical data briefs:

We are excited to share this resource with ASTHO and look forward to partnering with members to maintain and extend the utility of the NSCH. We hope that these data can inform the critical policy and program planning, implementation, monitoring, and evaluation processes that you engage in to support and improve the health of children and families in your states and communities.


Reem Ghandour, DrPH, MPA, is the Director of the Division of Epidemiology in MCHB’s Office of Epidemiology and Research. The NSCH is funded and directed by HRSA MCHB and is led by the Office of Epidemiology and Research.