For the second part of our series on EPSDT, we’ll turn our attention to data. If you missed the first part, go back for a moment to catch up before continuing.

CMS-416

The official federal data source for EPSDT is the CMS-416 form. States are required to use this form to report EPSDT data to CMS annually. The form collects basic information and can be used to assess the effectiveness of state implementation of the EPSDT benefit that is mandatory in Medicaid and Medicaid-expansion CHIP programs and optional in separate CHIP programs.

The CMS-416 collects 10 basic data points (see text box), with some additional detail on certain topics, like dental. Each data point is reported by age group as follows: under 1 year, 1-2 years, 3-5 years, 6-9 years, 10-14 years, 15-18 years, 19-20 years, and all age groups combined.

Data from the CMS-416 are available dating back to 1995 and all the way up through 2015, but should be used with caution. Historically, CMS-416 data have been difficult for states to report accurately and although CMS has implemented additional data quality control procedures in recent years, concerns remain. For example, it is unclear if all EPSDT screens are captured accurately, particularly if delivered in a managed care context. Additionally, while CMS-416 data can be used to monitor a state’s progress over time, it is not a reliable metric to make comparisons across states because the metrics are not standardized. For example, each state may select a different periodicity schedule, impacting overall performance and preventing accurate comparisons.

Advocates should work with their state administrators to determine the reliability of the data. Some data points, like those related to dental, are more likely to be accurate.

Child Core Set

Following the CHIP Reauthorization Act of 2009, CMS finalized an initial core set of 24 children’s health care quality measures for voluntary use and reporting by Medicaid and CHIP programs. The initial core set has been updated periodically and continues to include a range of children’s quality measures encompassing both physical and mental health. The 2016 core set includes 26 measures categorized in seven areas: access to care, preventive care, maternal and perinatal health, behavioral health, care of acute and chronic conditions, oral health, and experience of care. (For more on the core set and other ways to measure and improve quality in Medicaid and CHIP, see this primer from Tricia Brooks.)

Importantly for monitoring EPSDT, three of the measures in the child core set are related to well-child visits: well-child visits in the first 15 months of life; well-child visits in the third, fourth, fifth, and sixth years of life; and adolescent well-care (ages 12-21). Well-child visits are a good proxy for an EPSDT screening because EPSDT screenings are generally conducted as part of a well-child visit. These measures are part of the Healthcare Effectiveness Data and Information Set (HEDIS) developed and maintained by the National Committee for Quality Assurance (NCQA) and were widely used by managed care companies before being incorporated into the child core set.

Unlike the CMS-416 data, the well-child visits reported as part of the child core set are standardized, thus allowing comparisons across states. The child core set is also more likely to capture visits delivered in a managed care setting, given the history of managed care companies relying on HEDIS measures. However, reporting of the child core set is voluntary. In 2014, forty states reported on well-child visits in the first 15 months in accordance with the data specifications, 46 states for 3-6 years, and 44 states for adolescents. Additionally, some states report these measures for Medicaid only, for CHIP only, for each program separately, or for both programs combined, so use caution when relying on the data to promote EPSDT performance in Medicaid and when comparing performance across states.

Both data sets offer insight into EPSDT performance, but it is hard to tell which more accurately captures the experience of children in Medicaid accessing EPSDT screening services. The CMS-416 data doesn’t tell us the share of children who received all of the required screenings, and the child core set doesn’t always tell us the story for Medicaid apart from CHIP. Neither measure tells us whether children screened were diagnosed and treated accordingly. Advocates should work with their states to review EPSDT screening rates and consider developing a performance improvement project to improve reporting and performance.