County Level Surveillance of Sickle Cell Disease Population, Healthcare Utilization, and Fragmentation to Support Improvements in Access to Care

Susan T Paulukonis, Elliott Vichinsky, Marsha Treadwell and Mary Hulihan


Little is known about the health care, complications, and outcomes of those living with sickle cell disease (SCD) in the US, outside of patients seen in specialty SCD clinical settings. Adults, in particular, are less likely to be seen in specialty settings. CDC has implemented the Sickle Cell Data Collection (SCDC) program in California and Georgia to establish true population-based surveillance systems at the state level in an effort to address these gaps in knowledge. These data allow investigation of healthcare utilization and outcomes in these states for the majority of patients with SCD in all settings, even if not seen by SCD specialists.

Such data can be used to identify and address specific problems, such as care fragmentation (use of multiple, unconnected facilities by high utilization patients) and lack of access to quality care. Researchers at University of California San Francisco Benioff Children's Hospital Oakland (BCHO) collaborated with SCDC to obtain aggregated data about SCD patient populations, care fragmentation, and inpatient and emergency department utilization (ED) in five Northern California counties. BCHO's goal was to obtain NHLBI grant funding through the Sickle Cell Disease Implementation Consortium (SCDIC) to support outreach and interventions for adolescent and adult patients (ages 15-45 years) seen in hospital settings but not by SCD specialists.

California hospital admissions, ED and Medicaid claims data for the years 2004 through 2015 were obtained by SCDC for those with SCD ICD codes, and linked by social security number and date of birth. Patients with three or more SCD coded encounters within any five-year period were included. Data for these patients was used to determine frequency of utilization at EDs and inpatient facilities in the included counties and care fragmentation patterns to guide outreach efforts for BCHO's team. Care fragmentation is described as low if >= 90% of hospital/ED encounters were at same facility, high if under 75% were at any one facility, and medium between these cutoff points.

There were 1,024 persons with recent (2013-2015) healthcare utilization (Medicaid claims, inpatient or ED) in the catchment area, ages 15-45 during the three year period (Table 1). Sixty three percent (n=493) of the identified adults and 64% (n=157) of pediatric patients had one or more ED visits or inpatient stays during the three years. Seventy three percent of the pediatric patients had low levels of care fragmentation while almost half of the adults had medium or high (Table 2). Overall, most patients (75%) were seen at one or two facilities only.

Now awarded, BCHO's grant supports targeted outreach to ED facilities in these counties with a high number of patients with SCD. Providers and patients are participating in a needs assessment that will inform strategies to bring patients into specialty outpatient care, training and support for providers, and strategies to enhance disease self-management. With the goal of reducing care fragmentation and bringing more patients into care with providers knowledgeable about SCD, the primary targets of BCHO's outreach efforts are the 25 EDs and 5 inpatient facilities that are not affiliated with a SCD specialty care setting. Those facilities that had 25 or more encounters with patients with SCD in any one year (Table 1) have been approached about collaborating with the project. BCHO's secondary targets will be the 13 EDs and 29 inpatient facilities with more than one but fewer than 25 such encounters per year. Future collected data can be used to evaluate the effectiveness of the outreach and training efforts over the course of the grant. Data from public health surveillance in SCD and other rare disorders has the potential to inform specific program improvements and cross organization collaboration, leading to better outcomes for patients.

Disclosures No relevant conflicts of interest to declare.

  • * Asterisk with author names denotes non-ASH members.