Paths Grant: Using the Hub and Spoke Model to Improve Access to Care for Adults Living with Sickle Cell Diseases

Introduction: Healthcare providers with expertise in sickle cell disease (SCD) are scarce in the United States, particularly in low-income and rural communities. The most common complication of SCD, vaso-occlusive crisis/episode (VOE), often requires treatment in an emergency department (ED) and the administration of intravenous opioid medications. When seeking care in an ED for pain, patients are often labelled as “drug-seeking” and left to suffer, unable to access the expert care they need. Infusion centers (IC) are an evidence-based alternative to ED care and are associated with better outcomes for treatment of uncomplicated VOEs1. It is critical to identify successful implementation strategies to integrate guideline-based care for SCD and to identify providers with the expertise to manage this complex disease close to where patients live. In Prince George's County (PGC), Maryland, there are an estimated 1,550 people living with SCD and no comprehensive adult sickle cell centers. To access high-quality SCD care, patients must travel at least an hour when experiencing a VOE. We describe the implementation of a hub and spoke model with regional adult sickle cell centers to improve access to high quality care for people living with SCD in an underserved region2. Methods: We conducted a multi-site implementation study that included a new dedicated IC at a community hospital (spoke) facilitated by a large, well-established comprehensive care center (hub). This study was approved by the institutional review board across all clinical sites. Funding also supported partnerships with a community-based organization (CBO) that provided community health workers to address social determinates of health (SDOH) and a comprehensive pediatric program which expanded services for transition to adult care. The spoke was staffed by a part-time palliative care trained physician, an advanced practice provider, a nurse and front desk staff. Staff at the spoke were trained by the hub, who also provided weekly supervision from a clinical and operations standpoint. The spoke IC had 6 chairs used both for acute and continuity care Monday through Friday from 9am-5pm. Data on outpatient, inpatient, and ED utilization were collected for adult residents of PGC with SCD from the regional Health Information Exchange (HIE) and the spoke electronic medical record. Results: From 2022 to 2024, 174 adult patients with SCD were provided clinical care at the spoke. A dedicated adult SCD IC opened at the spoke in March 2023 and during the first 15 months, there were 949 encounters (636 infusion visits for pain, 313 scheduled visits for routine sickle cell care). Only 13 (2%) of the infusion visits resulted in hospital admission. Before the IC opened in 2022, there were 295 ED visits for SCD in the 5 community hospitals in PGC for residents of PGC. The spoke facility accounted for 107 (36%) of these ED visits in 2022. In 2023, total ED visits for SCD in any hospital in the county dropped by 13%, and the proportion seen at the spoke remained 36%. The admission rate from the ED at the spoke facility decreased from 26% prior to the IC opening to 14% after opening. Using aggregate HIE data, outpatient visits (including IC visits) for SCD among PGC residents within their county increased by 377% (61 in 2022, 200 in 2023, projected 500 in 2024), and there was a 41% decrease in inpatient admissions for county residents with SCD in county hospitals with no corresponding increase in hospitalizations outside the county. Conclusions: The hub and spoke model is an efficient way for the hub to extend its clinical reach to meet the needs of adults living with SCD in underserved areas of the US. Future evaluations will examine whether this model increases use of appropriate disease modifying therapy and patient reported outcomes.