Developing a Community Engaged Sickle Cell Disease Center: An Initial Data Analysis of Healthcare Utilization Rates and Perspectives of Key Informants.

ABSTRACT Background The mortality rate of individuals with Sickle cell disease (SCD), the most prevalent genetic disease in the United States, has been increasing at 1% per year. It has been declared a global and national public health priority by the World Health Organization (WHO) and Centers for Disease Control and Prevention (CDC). As a complex chronic and acute condition, preventive care and patient management of SCD requires a patient-centered, comprehensive, and multidisciplinary approach; unfortunately, few SCD treatment centers use this approach. Moreover, individuals with SCD are at the intersectionality of race and socioeconomics and thus face additional barriers to access to quality care, which may ultimately result in higher utilization of acute care services, especially during the transitioning period from pediatric to adult care. Greater acute care utilization has been found to be associated with higher mortality rate and severely compromised health related quality of life; thus, it is important to assessing needs of SCD patients as they relate to access to quality care. Objective The aim of this study was to conduct a preliminary needs assessment for the development of a community engaged SCD center. This study also aimed to determine if frequency of acute care utilization was associated with age and insurance type, to provide surveillance data, and to identify opportunities to address barriers to access to quality care from key informant (local and cross-institutional) perspectives. Method A retrospective cohort study of SCD related emergency department (ED), inpatient hospitalization, and outpatient clinic utilization encounters, which occurred from 09/01/2012-06/01/2019, was queried from UF Health’s Integrated Data Repository (IDR). Quantitative analysis, frequencies, proportions, and Pearson Chi-square inference were conducted on the administrative data received. Further, key informant interviews of stakeholders in Alachua County, FL and Yale New Haven Health’s Adult Sickle Cell Program, New Haven, CT were performed. An iterative qualitative thematic analysis of their perspectives was conducted. Result There were 27,932 total encounters that were stratified by age and payer type. The average length of hospitalization stay was .71 ± 3.84. The 18-30-year-olds had the highest proportion of ED utilization (34.7%), hospitalizations (32.1%), and outpatient clinic utilization (26.4%). This was followed by the 31-45-year-olds with 20.4% of ED utilizations, 22% of hospitalizations, and 20.5% of outpatient clinic utilizations. Those with public health insurance accounted for 74% of ED encounters, 81% of hospitalizations, and 82% of outpatient encounters. Common themes and subthemes from key informant interviews included: champion, transition of care, pain management, bias, patient and family education, provider knowledge, social worker, multidisciplinary/comprehensive care, mental health, education, and employment. Conclusion Among adults with SCD in the UF Health system, younger adults (e.g., those who are transitioning into adult care) and those with public insurance utilized acute care services at greater proportions, indicating a need to identify and address possible barriers to access to quality care.