Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
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Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs
Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs
Pages 453-458
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From page 453... ...
, reduce morbidity and mortality caused by SCD, reduce the number of individuals with SCD receiving care only in emergency departments, and improve the quality of coordinated and comprehensive services to individuals with SCD and their families. Sickle Cell Disease Newborn Screening Follow-Up Program: To ensure that individuals diagnosed with SCD through newborn screening receive appropriate follow-up services including counseling, education, access to a medical home, and other support services.
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From page 454... ...
SOURCE: PowerPoint presentation provided via email communication to National Academies staff by Edward Ivy, Medical Officer, Maternal and Child Health Bureau, Health Resources and Services Administration.
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From page 455... ...
in 15 states • se Project Extension for U • rain 150 community health workers T Community Healthcare • ncrease partnerships: Informal I Outcomes (ECHO) , a and formal, CBOs, hospitals, telementoring program that health systems, state public health allows specialists to network departments, primary care providers, and educate other providers, to federally qualified health centers support strategies to increase • erve 15,000 individuals with SCD S the number of providers through: knowledgeable about evidence- a. Outreach based sickle cell care b. Education • ncrease the number of I c. Linkage to medical home individuals with SCD receiving d. Referrals to support services hydroxyurea by 10 percent e. are in a patient-centered medical C • ptional additional activities O home include efforts to: a. Increase recommended pneumococcal vaccinations b. Increase documented transcranial Doppler ultrasound c. ncrease transition plan to I an adult provider Scope • rogress in State Action Plan P • Technical Assistance: Development, Project ECHO, a. ommunity of Practice -- Convene C and Data Collection CBOs by region to share successes, • 3 states involved with regions 4 challenges, and best practices (has yet to reach all 50 states)
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From page 456... ...
456 ADDRESSING SICKLE CELL DISEASE TABLE H-1 Continued Sickle Cell Disease Treatment Sickle Cell Disease Newborn Screening Demonstration Program Follow-Up Program • Community Health Worker Training a. irtual Training -- SCDAA developed V curriculum b. ield Placement -- 40 hour F requirement • Peer-to-Peer Mentoring (InquisitHealth) a. oal is to support individuals and G families to access information, resources, and medical care by providing peer-to-peer psychosocial support b. eb-based platform that links W peer mentors to individuals and family members c. CDAA and InquisitHealth S developed a sickle cell-specific algorithm that ensures quality coaching and support by utilizing guided conversation guides d. racks utilization and contacts T • ransition Readiness Quality T Improvement Project a. ive CBOs will work with more F than 200 young adults aged 16–25 b. CDAA will disseminate best S practices for improving transition readiness and disseminate to the other 12 CBOs
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From page 457... ...
More than 1,000 adults now have access to high-quality care with the newly opened Adult Sickle Cell Clinic at the Martin Luther King, Jr. Outpatient Center in Los Angeles Hydroxyurea use: • eartland pediatric patients: H 12–20 percent; adult patients: 14.3–17.3 percent • idwest all patients: M 48–69 percent • ortheast pediatric patients: N 23–34 percent; adult patients: 16–18 percent • acific all patients: P 29–42 percent Knowledgeable providers: • elementoring and telehealth T initiatives increased provider knowledge across the country • early 100 Project ECHO N clinics were held, expanding opportunities for provider education for more than 200 providers SOURCES: PowerPoint presentation provided via email communication to National Academies staff by Edward Ivy, Medical Officer, Maternal and Child Health Bureau, Health Resources and Services Administration.
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