A groundbreaking new study published in JAMA Network Open redefines high emergency department (ED) utilization among patients with sickle cell disease (SCD). Many harmful misconceptions around ED usage in this population exist and lead to poor treatment of pain in the ED. The study, led by Duke University School of Nursing’s , tackles a key question that often prevents those with SCD from receiving, or even seeking, appropriate treatment: how many ED visits are too many?

When patients with SCD seek care for their extremely painful vaso-occlusive episodes (VOEs), the recommended treatment for which is opioids, they face a number of barriers.

“The US is in the middle of an opioid crisis,” Dr. Tanabe explained. “Individuals with SCD are typically Black, and when seeking care for treatment of acute pain with opioids, they are often perceived as being addicted and often do not receive good care for their pain.”

She continued, “Another barrier is that a small number of persons have a very large number of ED visits, up to 200 per year, which leads to an increase in stigma and the perception of addiction, despite no data to support a high rate of opioid addition among individuals with SCD.”

Defining high emergency department usage for SCD patients

Current definitions for what constitutes high ED usage in the US is often considered 3-6 visits per year; the study's authors hypothesized that this was misaligned with the reality of SCD patients requiring more frequent emergency care.

To accurately capture ED usage by this patient population, Dr. Tanabe and her colleagues analyzed data from 9,964 unique patients with sickle cell disease (SCD) over a seven-year period in North Carolina. They identified four categories of ED visits: low (0-1 visits per year), moderate (2-9 visits per year), high (10-32 visits per year), and super high (33 or more visits per year). They found that patients in the moderate, high, and super high categories were older, more likely to die younger, and had higher social vulnerability. These new categories, the study’s authors suggest, can help better understand and manage ED utilization among individuals with SCD. Findings also highlight how high risk these patients are given they are more likely to die younger.

Additionally, the findings highlight the significant impact of social determinants of health on ED utilization for SCD patients. Patients with higher ED utilization often lived in disadvantaged areas and faced challenges such as transportation issues and housing insecurity. The study also found that patients with super high ED utilization were more likely to visit multiple EDs, indicating unmet medical, social, or behavioral health needs.

This study falls under the umbrella of a body of a work produced by a number of Duke University School of Nursing faculty working to better understand and address SCD, positioning the School at the fore of SCD nursing research nationwide: Dr. Tanabe; ; ; ; ; and Wei Pan, PhD.

“Several of our faculty lead robust research focused on improving health outcomes among people with

SCD and addressing system barriers to care,” said Dr. Kayle. “For example, Dr. Knisely’s research focuses on understanding the pain experience and evaluating non-pharmacological interventions to treat pain in SCD. Dr Ibemere’s research focuses on improving access to high quality care by developing community and culture-driven intervention in both the US and West and Eastern Africa.”

As the team of researchers looks towards next steps to address SCD, Dr. Tanabe, who co-leads the Medical Research Committee of the North Carolina Governor’s Council for Sickle Cell Disease, stressed the impactful nature of the study.

“What you can see from the paper with the now 4 categories,” she continued, “is that a small number of people, about 1.7%, had 33 or more ED visits in a year. However there were about 7.6% of people that also had 10-32 ED visits. Our analysis is really the first time someone tried to categorize actual utilization based on actual data.”

For next steps, the researchers recommend developing individualized pain plans (IPPs) and making them available in electronic medical records and patient portals. This can help ensure that patients receive appropriate care for VOEs in any emergency department. They also suggest involving hematologists, social workers, and payers in discussions to identify and address the causes of moderate ED use before it escalates to high or super high utilization, especially given that patients in those groups were shown to be more likely to die and to die younger.

“By using these data-based cutoffs for high ED use among SCD patients, EDs and hospital systems throughout the US and globally can screen to identify patients at highest risk, and refer them to interventions to better meet their medical, behavioral, and social health needs,” Dr. Tanabe said.

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Nurse scientists and researchers at Duke University School of Nursing are leading the charge to address healthcare challenges here in North Carolina and across the globe. Learn more by visiting our Center for Nursing Research. 

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