SC-Links - Linking the Sickle Cell Community, Providers and Systems to Improve Sickle Cell Disease Care

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Project Summary This proposal establishes a formal collaborative consortium, SC-Links, that addresses NHLBI's strategic plan goal to foster improved understanding of the processes involved in translating research into practice for youth and adults with sickle cell disease (SCD) in the U.S. This population has faced long-standing and pervasive inequities in accessing preventive care with outpatient providers who are knowledgeable about SCD, and with accessing consistent, high quality care when seeking treatment in the emergency department (ED) for severe pain. The consortium brings together the expertise of SCD clinical and health services researchers, implementation scientists and a range of stakeholders, in multi-level interventions that target individuals, providers, healthcare systems and communities with the specific aims to: 1a) Establish a common framework of the problem of SCD care in the region, consider strategies to adapt evidence-based interventions for meeting unique patient and provider needs and propose feasible healthcare infrastructure enhancements that can help routinize preventive care for youth and adults ages 15 – 45 years with SCD; 1b) Engage the larger SCD stakeholder community in a mixed methods needs assessment to identify facilitators and barriers to preventive and acute SCD care and effective patient self-management; and enroll patients in the SCD registry; 2) Establish a population-based SCD Registry and recruit a minimum of 300 youth and adults in a five county area (representing important variations in care) in N. California. This cohort will be enrolled in interventions in Phase II of SC-Links; and 3) Implement and evaluate the impact of the SC-Links intervention components including: improving operations within SCD and primary care delivery settings to ensure that patients receive health maintenance and hydroxyurea monitoring according to the NHLBI guidelines; introducing evidence- based health coaching to engage patients, identified through the registry, as in need of primary or SCD outpatient care; and implementing a standard order set in participating EDs to improve timely assessment and treatment of acute SCD-related pain. The target population for these interventions is 605 youth and adults with SCD in the region. The research uses evidence-based models not previously applied to SCD research, to inform understanding of barriers/enablers to shape intervention components and to assess population health measures such as effectiveness at reaching a wide range of clinical sites and representativeness of the registry sample. The project draws on a newly established statewide longitudinal SCD surveillance system and incorporates measurement that is harmonized across studies. The research uses the highest level of randomization feasible, including the novel stepped-wedge cluster study design to introduce standard order sets for SCD pain in the ED. By using established and innovative approaches to theory, measurement and research design, the project advances scientific knowledge of the best methods to promote clinical practice changes to lessen the gap between the evidence base and appropriate treatment and preventive SCD care.