| Data collection and analysis |
Disseminated questionnaires to individual providers or contracted treatment centers on quarterly or annual basis to ensure children were in care. Used secondary data (e.g., hospital data, Medicaid claims) for comprehensive needs assessments and activity planning.
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Limited capacity to analyze data from providers or secondary sources. Most data collection/analysis activities are not truly population level given population mobility, loss to follow-up.
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| Policy development |
Convened newborn screening advisory. committees/hemoglobinopathies working groups. Created state plans/consortia with key stakeholders. Used a regular planning cycle that coincided with grant funding for treatment centers to assess needs and inform programs. Collaborated with state Medicaid or children with special health care needs programs. Held annual family day at state capitol to increase awareness of sickle cell disease among policy makers.
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Demographic changes in states with increasing Hispanic and African populations. Lack of funding to for planning or fully implementing plans and programs. Reliance on dedicated individuals (advocates, specialists) who drive policy and programming and are difficult to replace.
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| Quality assurance |
Developed standards of care (e.g., care pathways for emergency department visits, pain management, medical home) in consultation with stakeholders at state and/or regional level. Leveraged contracts (funded or unfunded) with designated treatment centers to set standards, and to monitor and evaluate activities. Conducted annual newborn screening program evaluations that included parent satisfaction surveys. Utilized newborn screening program funded hemoglobin follow-up coordinator at treatment centers to track and reduce time to specialist referral. Reported to state legislature on meeting goals for penicillin prophylaxis.
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Reliance on treatment centers/specialists to develop standards of care; perception of limited role for newborn screening program Most quality improvement activities conducted at individual treatment centers; not statewide and not coordinated with or led by newborn screening program.
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| Coordination |
Held annual conferences that included professional organizations, churches, community based organizations, etc. Convened contracted treatment centers annually to increase coordination and communication. Created memoranda of understanding or other agreements with community based organizations so they could send them information on positive screens/trait, and they could do outreach. Automatically referred affected children to children with special health care needs case management, Early Intervention; collaborated with school nurses.
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Difficulty engaging primary care physicians across the state; many individuals each with very few affected patients. Collaborations with community based organizations vary greatly depending on their size, number, history of leadership and involvement with newborn screening program and other organizations. Lack of mechanisms to encourage coordination and communication across treatment centers.
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| Workforce development |
Provided updated information on sickle cell disease for clinicians and families in print and online. Held annual symposia or meetings to provide education to a range of providers and consumers. Created a written education plan for clinicians; comprehensive treatment handbook. Funded local newborn screening projects to provide outreach and education to providers (example: survey of school nurses to inform education efforts). Trained counselors at community based organizations to provide trait counseling to families.
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Need for increased knowledge among care providers in emergency departments, urgent care centers in treating sickle cell crises. Lack of providers for adolescents transitioning out of pediatric specialty care.
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| Access to services |
Increased access to care through mobile clinics in rural areas or collaborations with community health centers. Used regional social workers or newborn screening program-funded coordinators at treatment centers to ensure follow-up. Developed computer systems that allow newborn screening program and treatment centers to share information about screening results, treatment plans, etc. Conducted focus groups with parents to evaluate access to care. Tracked receipt of services (when number of treatment centers is small).
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Most states track children only until confirmatory diagnosis or initiation of specialty care. Size/structure of state and location/number of treatment centers may have a significant impact on follow-up and tracking activities. Few states reported transition services for adolescents moving on to adult care.
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