Measuring health care transition: Across time and into the future

Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.d.). This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination. Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure. Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families. •Maternal and Child Health Bureau have measured Health Care Transition service provision since 2001.•HCT measurement has undergone numerous changes in criteria and question format over the 20 years it has been assessed.•The National Survey of Children's Health HCT assessment includes important youth independence and skill-building questions.•Future works should validate the Health Care Transition measure in national surveys to promote consistency and more extensive use.