174 - Primary Care Engagement Among Patients with Sickle Cell Disease at a Large Academic Medical Center

Poster Number: 174
Publication Number: 174.412

Alexandra M. Sims, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Chunyan Liu, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Shelley Ehrlich, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Lauren Lipps, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Charles T. Quinn, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Lori E. Crosby, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Andrew F. Beck, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States

Background: Children with sickle cell disease (SCD) experience considerable morbidity and mortality, and potentially avoidable healthcare utilization. Primary care may help prevent SCD complications. Lacking primary care is a driver of health disparities for people with SCD, but families may underutilize primary care pediatricians (PCPs) or lack clarity on a PCP’s role for their child with SCD.

Objective: To determine primary care engagement and use for children with SCD at a large academic medical center.

Design/Methods: We conducted a retrospective review of the electronic health record (EHR) for all patients < 22 years of age in our Comprehensive Sickle Cell Center. Characteristics and outcomes of interest included treatment with hydroxyurea, SCD genotype (mild/moderate: HbSC, HbS-B+thal; severe: HbSS, HbS-B0thal), hematology outpatient visits, hematology day hospital visits, hospitalizations, and emergency department (ED) visits. Utilization data were captured between 6/1/20-7/1/21. The exposure of interest was a PCP specified within the EHR. Those who had a hematologist as their listed PCP were categorized as “no PCP.” Descriptive statistics were computed. The Wilcoxon rank sum test was used for continuous/count variables. The Chi-square or Fisher’s exact test were used for associations between categorical variables.

Results: Data on 283 patients with SCD were analyzed; 81% (n=229) had a PCP listed (Table 1). Of the 229 patients with a listed PCP, 111 (49%) PCPs were internal to our hospital system. For the 111 patients who had an internal PCP, there were 0.77 PCP visits per patient from 6/1/20–7/1/21. Those without a PCP listed were older than those with a listed PCP (median age 13.8 vs. 9.0 years; p < 0.001). Those without a listed PCP were more likely to have Medicaid insurance than those with a listed PCP (71.2% vs. 65.7%; p=0.02). Patients without a PCP listed were more likely to be prescribed hydroxyurea (p=0.04) and to have severe disease (p=0.01) (Table 2). Those without a PCP listed were more likely to have at least 1 hematology day hospital visit than those with a listed PCP (20.4% vs. 8.4%; p=0.01). Hematology outpatient visits, ED visits, and hospitalizations were not significantly different between patients with and without a listed PCP.Conclusion(s): Most patients with SCD had a listed PCP in their EHR. Those without a listed PCP were older, and more likely to have Medicaid insurance, be prescribed hydroxyurea, have a severe SCD genotype, and have a day hospital visit. Opportunities exist to enhance the partnership between primary care and hematology to improve care for children with SCD.
Table 1. Patient demographics by status of having a PCP.
Table 2. Patient clinical factors & healthcare utilization by status of having a PCP.