A Novel Sickle Cell Outreach Program Improves Access to TCD Screening, Vaccines and Hydroxyurea in a Medically Underserved Area

Background: The Sickle Care Coordination, OutReach, Education Program (SCORE) was created in 2017 to improve access to hematology care and care coordination services for children with sickle cell disease (SCD) in an urban community in Lake County, Indiana. Although Lake County has the second highest prevalence of SCD in Indiana, it lacks a pediatric hematologist, and the closest pediatric hematology practice is 65 miles away. Newborn screening data from 2009-2017 showed that only 25% of children in this underserved area received Transcranial Doppler (TCD) and only 25% received the 23 valent pneumococcal vaccine, compared with 70% for both in other regions of Indiana. The goal of the SCORE clinic is to increase TCD screening and vaccination rates as well as increase the number of children who are prescribed hydroxyurea (HU) at maximum tolerated dosing (MTD).

Methods: Quarterly SCORE outreach clinics were established in Lake County, Indiana in August 2017, which is 145 miles Northwest of our center. A multi-disciplinary team (social worker, sickle cell educators, nursing staff) accompanies the pediatric hematologist and physician assistant to clinic. Vaccines are administered in SCORE clinic and laboratory tests are drawn on site. Same day TCD screening was established in May 2018. The state's electronic vaccine record was queried to determine which SCD-specific vaccines the children needed prior to each clinic. Education about SCD, HU, and needed screening tests like TCD was provided by members of the multi-disciplinary team.

Results: One hundred thirty-one visits have been made to the 10 SCORE outreach clinics that have been held since August 2017. Forty children have received hematology care in the SCORE clinic; 35 (87.5%) children have had at least 2 visits. Twenty-two children were eligible for HU; sixteen (72.7%) were already taking HU at the time of their first visit to SCORE outreach clinic (mean dose prior to first SCORE visit: 18.6 + 5.9 mg/kg/day). Mean HU dose increased significantly after being followed by the SCORE clinic team (26.5 mg/kg/day, p=0.00002). The remaining 6 children initiated HU after receiving care in the SCORE outreach clinic. Nineteen children were eligible for TCD screening since their first SCORE clinic visit, and fourteen (73.7%) children completed the screening. One hundred twenty-one vaccines have been given in clinic to date: 100% of children who were eligible for the 23 valent pneumococcal, hepatitis A and B vaccines have received them. Seasonal influenza vaccine was given to 76.9% of eligible children. Forty-six of the 54 (85.2%) Menveo doses that were due were given, and 80% of Bexsero doses that were due were given.

Conclusion: The SCORE program has increased access to pediatric hematology care for children with SCD in an urban, underserved community in Indiana. In the first 2 years of the program, TCD screening rates and pneumococcal vaccination rates have increased to the level seen in other regions of the state. Children who received care in the SCORE outreach clinic had a significant increase in their HU dosing. Outreach clinics can increase access to specialty care in underserved areas.