Health Care Utilization by Adolescent/Young Adult Patients With Sickle Cell Disease in Delaware

Stephanie Guarino,Charmaine Wright,Sophie Lanzkron

doi:10.7759/cureus.22700

Abstract

Patients with sickle cell disease transition from the pediatric to the adult health care system during a vulnerable time in their lives, resulting in increased morbidity and mortality during this adolescent/young adult (AYA) period. The purpose of this study is to examine the health care utilization of a cohort of adolescent/young adult patients with sickle cell disease in the main adult health care system in Delaware. Analysis of an electronic health record (EHR) data set of emergency department encounters and inpatient admissions for all patients with sickle cell disease between July 2016 and June 2017 was performed. This revealed significant variability in health care utilization by adolescent/young adult patients with sickle cell disease. There was a small cohort of high utilizer patients with multiple emergency department visits and inpatient admissions. These high-utilizing patients might benefit from targeted interventions and a primary care medical home. By analyzing health care utilization and identifying the needs of this chronic disease cohort, a comprehensive care program specifically for adolescents/young adults could be developed to address the needs of the patients and to correct the gaps in the current system.

Highlights

Sickle cell disease, an autosomal recessive hemoglobinopathy causing anemia, affects approximately 100,000 people in the United States according to the Centers for Disease Control and Prevention and is found predominantly in African-Americans [1]
The purpose of this study is to examine the health care utilization of a cohort of adolescent/young adult patients with sickle cell disease in the main adult health care system in Delaware
We did descriptive statistics to assess resource utilization, focusing on the adolescent/young adult cohort. This project was approved by the Christiana Care IRB by expedited review with a waiver of informed consent according to 45 CFR 46.116(d) and waiver of Health Insurance Portability and Accountability Act (HIPAA) Authorization according to 45 CFR 164.512(1)(i)2 (ii)

Summary

Introduction

An autosomal recessive hemoglobinopathy causing anemia, affects approximately 100,000 people in the United States according to the Centers for Disease Control and Prevention and is found predominantly in African-Americans [1]. Significant progress has been made in improving mortality for pediatric patients, the same gains have not been seen in adolescent and young adult patients, ages 15-39. The process of transitioning from pediatric to adult health care systems can be disjointed, contributing to the high morbidity and mortality seen in this population [5]. Research shows that patients with Type I diabetes experience poorer disease control and health outcomes during the transition period, underscoring the importance of appropriate monitoring and treatment during this time [6]. Previous research has shown that adolescent/young adult patients with sickle cell disease have higher emergency department utilization and lower primary care usage, highlighting the system failures that exacerbate the chronic condition of sickle cell disease [7]

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