Advancing Newborn Screening Long-Term Follow-Up: Integration of Epic-Based Registries, Dashboards, and Efficient Workflows
Abstract
:1. Introduction
2. Materials and Methods
2.1. Registry Optimization
2.2. Capturing External Data from Health Information Exchanges
2.3. Incorporating Evidence-Based Guidelines and Decision Support
2.4. Selection of Quality Measures and Dashboards
2.5. Attention to Workflows and Training
2.6. Quantitative Methods
2.7. Quantitative Analysis Methods
2.8. Qualitative Methods
3. Results
3.1. Trends in %UTD on Visits
3.2. Comparison of %UTD on Visits between Early Childhood and Legacy Cohort
3.3. Trends in Additional KPMs
3.4. Qualitative Results
4. Discussion
4.1. Four Core Components
4.2. Mitigating Challenges
4.3. Quantitative Evaluation
4.4. Qualitative Evaluation
4.5. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Specialty/ Population | Metric Evaluated 1 | Aug ‘21 (Baseline) | Feb ‘22 | Aug ‘22 | Feb ‘23 | Aug ‘23 |
---|---|---|---|---|---|---|
Endocrinology/ Early Childhood Cohort with CH | %UTD on TSH and Free T4 labs | 82% (27/33) | 100% (38/38) | 100% (39/39) | 91% (40/44) | 95% (42/44) |
Genetics/ Early Childhood Cohort with VLCADD | % with cardiology referral in place by age 1 yr | 50% (1/2) | 100% (3/3) | 100% (3/3) | 100% (2/2) | 100% (2/2) |
Hematology/ Early Childhood Cohort with severe SCD aged 2 yr–4 yr | %UTD on TCD 2 | 43% (3/7) | 75% (6/8) | 90% (9/10) | 73% (8/11) | 92% (12/13) |
Hematology/ Early Childhood Cohort with severe SCD | % currently prescribed or offered hydroxyurea | 80% (8/10) | 100% (11/11) | 100% (11/11) | 85% (11/13) | 100% (13/13) |
Hematology/ Early Childhood Cohort with severe SCD | % with first penicillin order before age 3 mo | 50% (5/10) | 91% (10/11) | 91% (10/11) | 85% (11/13) | 100% (13/13) |
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Raboin, K.; Ellis, D.; Nichols, G.; Hughes, M.; Brimacombe, M.; Rubin, K. Advancing Newborn Screening Long-Term Follow-Up: Integration of Epic-Based Registries, Dashboards, and Efficient Workflows. Int. J. Neonatal Screen. 2024, 10, 27. https://doi.org/10.3390/ijns10020027
Raboin K, Ellis D, Nichols G, Hughes M, Brimacombe M, Rubin K. Advancing Newborn Screening Long-Term Follow-Up: Integration of Epic-Based Registries, Dashboards, and Efficient Workflows. International Journal of Neonatal Screening. 2024; 10(2):27. https://doi.org/10.3390/ijns10020027
Chicago/Turabian StyleRaboin, Katherine, Debra Ellis, Ginger Nichols, Marcia Hughes, Michael Brimacombe, and Karen Rubin. 2024. "Advancing Newborn Screening Long-Term Follow-Up: Integration of Epic-Based Registries, Dashboards, and Efficient Workflows" International Journal of Neonatal Screening 10, no. 2: 27. https://doi.org/10.3390/ijns10020027
APA StyleRaboin, K., Ellis, D., Nichols, G., Hughes, M., Brimacombe, M., & Rubin, K. (2024). Advancing Newborn Screening Long-Term Follow-Up: Integration of Epic-Based Registries, Dashboards, and Efficient Workflows. International Journal of Neonatal Screening, 10(2), 27. https://doi.org/10.3390/ijns10020027