A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department

Abstract

Study objective: Guided by an implementation science framework, this needs assessment identifies institutional-, provider-, and patient-level barriers to care of sickle cell disease (SCD) in the emergency department (ED) to inform future interventions conducted by the multicenter Sickle Cell Disease Implementation Consortium. Methods: The consortium developed and implemented a validated needs assessment survey administered to a cross-sectional convenience sample of patients with SCD and ED providers caring for them. In total, 516 adolescents and adults with SCD and 243 ED providers from 7 and 5 regions of the United States, respectively, responded to the ED care delivery for SCD survey. Results: Survey results demonstrated that 84.5% of respondents with SCD have an outpatient provider who treats many patients with SCD. In the ED, 54.3% reported not receiving care fast enough and 46.0% believed physicians did not care about them and believed similarly of nurses (34.9%). Consequently, 48.6% of respondents were "never" or "sometimes" satisfied with their ED care. Of surveyed ED providers, 75.1% were unaware of the National Heart, Lung, and Blood Institute recommendations for vasoocclusive crises, yet 98.1% were confident in their knowledge about caring for patients with SCD. ED providers identified the following factors as barriers to care administration: opioid epidemic (62.1%), patient behavior (60.9%), crowding (58.0%), concern about addiction (47.3%), and implicit bias (37.0%). Conclusion: The results underscore that many patients with SCD are dissatisfied with their ED care and highlight challenges to optimal care on the practice, provider, and patient levels. Exploring these differences may facilitate improvements in ED care.

Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA

“… 13 Results from an SCDIC survey of ED physicians found similar barriers to opioid use in patients with SCD including the opioid epidemic, addiction and implicit bias. 15 Additionally, the authors found that, although ED physicians felt very comfortable in their knowledge of caring for patients with SCD, 75% were unaware of NHLBI care recommendations for patients with SCD and vaso-occlusive crisis. 15 In both non-emergency and emergency settings, these factors, coupled with suboptimal awareness of SCD care guidelines, create great dissatisfaction with care among patients, 24 and suggest the need for more SCD specific training for physicians.…”

“… 15 Additionally, the authors found that, although ED physicians felt very comfortable in their knowledge of caring for patients with SCD, 75% were unaware of NHLBI care recommendations for patients with SCD and vaso-occlusive crisis. 15 In both non-emergency and emergency settings, these factors, coupled with suboptimal awareness of SCD care guidelines, create great dissatisfaction with care among patients, 24 and suggest the need for more SCD specific training for physicians. Many of the providers in this survey were relatively early in their career or cared for fewer than 10 patients with SCD per year.…”

“…The SCDIC previously reported results from a separate survey to assess barriers to care within emergency departments (EDs) that did not include non-ED providers. 15 In this exploratory study, we surveyed a wide range of providers from different regions of the country and in different areas of medicine, focusing on non-emergency care and assessing the perceptions and factors that influenced their level of comfort in prescribing opioids and hydroxyurea as well as their knowledge and perceptions of managing complications of the disease. Our goal was to identify barriers in treating patients with SCD, with a specific focus on hydroxyurea and opioid prescriptions, and to inform the development of specific intervention strategies to be employed in planned implementation science studies within the SCDIC.…”

Addressing healthcare bias in caring for patients with sickle cell disease

“…4,5 Patients with SCD acutely feel the effects of implicit bias when presenting in the ED. 3 Implicit bias is the integration of stereotypes and negative ideas about a person or population into one's thoughts and actions, and it has been shown to impact the quality of care patients receive. 6,7 Reports show that some nurses think patients with SCD appear healthy despite their reports of pain and caring for them requires too much time.…”

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

“…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?…”