• Susan T Paulukonis, Lisa B Feuchtbaum, Thomas D Coates, Lynne D Neumayr, Marsha J Treadwell, Elliott P Vichinsky, and Mary M Hulihan.
• California Rare Disease Surveillance Program, Public Health Institute, Richmond, California.
• Pediatr Blood Cancer. 2017 Jun 1; 64 (6).

BackgroundClinical care for children and adults living with sickle cell disease (SCD) is often provided in the emergency department (ED). Population-based surveillance data can be used to describe the ED utilization patterns of this patient population.ProcedureA cohort of pediatric and adult California patients with SCD was identified from multiple data sources, and 10 years (2005-2014) of their treat-and-release ED utilization data were analyzed.ResultsAmong a cohort of 4,636 patients with SCD, 4,100 (88%) had one or more treat-and-release ED visits. There were 2.1 mean annual visits per person for the cohort (median 0.7; range 0-185). In a single year (2005), 53% had 0 treat-and-release ED visits, 35% had 1-3 visits, 9% had 4-10 visits, and 3% had 11 or more visits; this highest utilization group accounted for 45% of all patients' ED visits. ED utilization in this cohort was highest among young adults and also higher among older adults than pediatric patients.ConclusionThe majority of identified patients in each of the 10 years did not go to the ED, but nearly all had one or more such visits over the full span of time. This study highlights the power and utility of a multisource longitudinal data collection effort for SCD. Further study of the segment of the population with highest ED utilization may highlight areas where changes in healthcare and health policy could improve and extend the lives of patients with SCD.© 2016 Wiley Periodicals, Inc.

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