High-Impact, Modifiable Health Indicators From the National Survey of Children's Health

The National Survey of Children's Health (NSCH) monitors child health trends and guides population-level policy and program initiatives; however, improving population health for children and youth with special health care needs (CYSHCN) remains challenging. This study used expert consensus to identify modifiable and high-impact NSCH indicators for CYSHCN.

Indicators representing the "10 Domains for Conceptualizing Health" framework for children with medical complexity were selected from NSCH through dual independent review. Using modified Delphi survey methods, those with lived experience and professional experts in CYSHCN health across the country rated each indicator according to (1) amenability to policy/program intervention and (2) potential magnitude of impact on CYSHCN health. Consensus indicators had at least 80% of respondents agreeing they were amenable to policy/program intervention, had "major" impact on individual health, and impacted "many" CYSHCN. Weighted frequencies of each indicator were calculated for US CYSHCN from 2019-2021 NSCH data.

Over 3 survey rounds, 30 experts assessed 53 indicators, with round 2 and 3 response rates of 83% and 70%, respectively. Among 38 indicators perceived as amenable to policy/program intervention, 6 consensus indicators were identified, reflecting basic needs, health-related quality of life, and health system domains. Application of the consensus-derived indicators helped identify approximately 10 million families of CYSHCN potentially lacking basic needs, approximately 7 million families lacking adequate insurance access, and approximately 5 million lacking adequate mental/behavioral health service coverage or access.

This study identified potentially modifiable, high-impact NSCH health indicators for CYSHCN. The results reflect opportunities to focus clinical, policy, and program interventions.