Measure Status: Active
Evidence Level: This ESM is based on state data and measures access to/receipt of care, thus doesn’t align with a specific evidence-based strategy. Consider developing an ESM for one of the specific strategies in your state action plan to measure performance. Check MCHbest for examples to connect to the evidence.
Measurement Quadrant: Quadrant 4: Measuring quality of effect (% of "is anyone better off")
Service Type: Public health services and systems level of pyramid
Essential Public Health Services: 7. Assure effective and equitable health systems
Service Recipient: Activities related to systems-building
Goal: The baseline value for this measure, from the 2018-19 program grant cycle, is 40.3%. The program has set an improvement target of 5% for 2022, to 42.3%.
Numerator: Individuals ages 14-21 with sickle cell disease who had transition readiness assessments completed
Denominator: Individuals ages 14-21 with sickle cell disease who were served through the Sickle Cell Disease Care Transition program and kept a routine medical appointment
Significance: Sickle cell disease (SCD) grantees at three (3) Hemoglobinopathy Centers (HC) work directly and exclusively with youth in support services. HCs conduct peer support groups to gauge barriers to care and transition for youth and young adults with SCD. Transition navigators at HCs engage youth with SCD to ensure compliance with care regimens and to understand that barriers youth experience in caring for themselves. In studies by Treadwell et al. (2011) and Telfair (2004) participants with SCD voiced a fear of leaving their pediatric health care providers, expressing concern that adult care providers might not understand their needs and might not believe their complaints of pain. The youth also expressed concerns about having limited information about transition and about adult health care programs. There is increased risk for individuals with SCD during this transition period.
Data Sources and Data Issues: Sickle Cell Disease Care Transition contractor reports
Unit Type: Percentage, Unit Number: 100