Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers’ perspective

Abstract

Background Sickle cell disease (SCD) is an inherited blood disorder associated with acute pain crisis and other complications that lead to frequent emergency department (ED) visits. To improve outcomes, the National Heart, Lung and Blood Institute (NHLBI) published recommendations for management of acute pain crisis. NHLBI also funded eight centers across the United States to participate in the Sickle Cell Disease Implementation Consortium. This six-year effort consists of two phases. Phase one involved conducting needs assessments of barriers and facilitators to SCD care. The aim of this study was to describe challenges and facilitators to caring for SCD from the perspective of ED providers in central North Carolina (NC). Methods and findings We conducted a needs assessment survey with ED providers throughout NC. We also conducted focus groups and an interview with ED providers from three healthcare facilities in central NC. One hundred and eleven surveys (60.6% physicians, 26% registered nurses, 13.5% physician assistants) were completed and 13 providers participated in 3 focus groups and 1 interview. Slightly more than half (50. 4%) utilized individualized dosing protocols to treat sickle cell pain. Only 32.4% of the providers were aware of the NHLBI SCD recommendations. Barriers to care from the survey included: patient behavior (67.57%), the opioid epidemic (67.57%), overcrowding (64.86%), and concern about addiction (49.55%). Perceived barriers to care identified in the focus groups and interview included: high patient volumes, lack of SCD care protocols, poor communication among providers and stigma. Facilitators to care included: individualized pain plans, comfort prescribing opioids and electronic medical records. Conclusion SCD care is influenced by many factors. Our results illuminate the need for increased use of the NHLBI SCD recommendations, individualized pain protocols, and use of electronic medical records and other care-interventions, specifically geared towards improving provider knowledge and mitigating provider bias.

Opioid Use in Patients With Sickle Cell Disease During a Vaso-Occlusive Crisis: A Systematic Review

“…In 2014, the National Heart, Lung, and Blood Institute (NHLBI) released guidelines in an effort to improve outcomes for SCD patients during painful VOEs. They set recommendations for assessing APC patients through level two triage, administering IV opioids within 60 minutes of arrival to the ED, as well as implementing an individualized dosing protocol for additional analgesics if needed [ 18 ].…”

Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC)

“…Adequate recruitment has proven to be challenging, particularly in studies focusing on conditions that predominantly affect minority populations such as sickle cell disease (SCD) [1][2][3][4]. SCD is a complex, chronic, genetic blood disorder that primarily affects people of African descent [5,6]. In the United States, 1 in 396 African Americans has SCD, and one in 14 carry the trait [5].…”

“…The median lifespan for individuals with SCD is 42 years for males and 48 years for females [9]. In addition to the medical complexities of the disease, people with SCD encounter significant barriers to healthcare access and provision such as lack of insurance, lack of transportation to health facilities, stigmatization by healthcare providers, limited provider knowledge, and poor care coordination and transition within the healthcare system [6,10]. Due to the complexity of the disease, it is important to conduct research aimed at developing novel SCD therapies or interventions tailored towards addressing the numerous social, economic, and healthcare barriers faced by individuals with SCD [11].…”

If you Can’t Assess It, How Can you Treat It? Improving Pain Management in Sickle Cell Disease

“…In fact, most ED providers are unaware of the National Heart, Blood, and Lung Institute (NHLBI) recommendations for treating vaso-occlusive episodes in SCD. 8 Owing to the unpredictable and variable quality of ED care, a population that is already underserved continues to feel increasingly marginalized and has a growing distrust for the medical system. 9,10 Will Disseminating the Guidelines Fill the Gap?…”