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Barriers to Care for Persons With Sickle Cell Disease: The Case Manager's Opportunity to Improve Patient Outcomes

Brennan-Cook, Jill, DNP, RN, CNE; Bonnabeau, Emily, BA; Aponte, Ravenne, BA; Augustin, Christina, BS; Tanabe, Paula, PhD, RN, FAEN, FAAN

doi: 10.1097/NCM.0000000000000260

Purpose and Objectives: The purpose of this discussion is to review the barriers to care for patients with sickle cell disease (SCD). Chronic pain and the perception of addiction, implicit bias, frequent hospitalizations and emergency department visits, clinician and patient knowledge deficits, and SCD stigma all impede the ability to provide evidence-based care for patients with SCD. Case managers can coordinate and advocate for appropriate care that improves patient outcomes.

Primary Practice Setting: This discussion is relevant to case managers working with patients with SCD in the clinic, hospital, and emergency department.

Findings/Conclusions: Case managers can serve an important advocacy role and intervene to improve the coordination of services and efficient use of resources. This will lead to improved quality of life and optimal health care utilization for persons with SCD.

Implications for Case Management Practice: As a constant member of the health care team, the case manager may be the only health care team member who has a broad knowledge of the patient's experience of acute and chronic pain, usual state of health, social behavioral health needs, and how these factors may affect both inpatient and outpatient health care use and health outcomes. This article explores the barriers to care and suggests specific interventions within the role of the case manager that can improve care delivered and ultimately contribute to improved patient outcomes. Specifically, these interventions can improve communication among members of the health care team. Case manager interventions can guide coordination, prevent hospital readmissions, reduce health care utilization, and contribute to overall improved patient quality of life and health outcomes.

Jill Brennan-Cook, DNP, RN, CNE, is Assistant Clinical Professor at Duke University School of Nursing and teaches in the ABSN program. Her current research interests are sickle cell disease, educational strategies, health equity, nutrition, and wellness.

Emily Bonnabeau, BA, is Clinical Research Coordinator at Duke University School of Nursing. She has a bachelor's degree in Sociology and Black Studies with a concentration in Criminology and minor in Political Science from State University of New York at New Paltz. Her research interests include health inequities.

Ravenne Aponte, BA, is current Accelerated Baccalaureate Student Nurse and Health Equity Academy Scholar at Duke University School of Nursing. She has a bachelor's degree in African American studies and Health Disparities from the University of Florida. Her research interests include health disparities in minority populations and global health.

Christina Augustin, BS, is current Accelerated Baccalaureate Student Nurse and Health Equity Academy Scholar at Duke University School of Nursing. She has a bachelor's degree in Health Education from the University of Florida where she developed an interest in sickle cell disease research and bone marrow transplantation.

Paula Tanabe, PhD, RN, FAEN, FAAN, is Professor of Nursing at Duke University. Her program of research is focused on improving systems of care for individuals living with sickle cell disease.

Address correspondence to Jill Brennan-Cook DNP, RN, CNE, School of Nursing, Duke University, 307 Trent Dr, Durham NC 27710 (

The authors report no conflicts of interest.

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