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Barriers to proper treatment for sickle cell disease (SCD) depend not only on individual patient factors. Other factors involving healthcare provider knowledge on treating SCD and expertise can also hinder access to appropriate care. SCD is a rare disease that can lead to acute and chronic complications in patients. For this reason, optimal care is necessary to prevent worsening symptoms and poor clinical outcomes.

But how exactly do healthcare providers fit into the right treatment plan? To help answer this question, the Sickle Cell Disease Implementation Consortium (SCDIC) conducted a provider survey across several clinical centers in the United States. Its findings were published in BMJ Open. 

Ultimately, it was found that the majority of the surveyed providers were trained in pediatrics or hematology. Most providers reported that they felt comfortable treating pain episodes in patients with SCD. Approximately 77% said they felt comfortable treating acute pain episodes, while 63% reported they were comfortable treating chronic pain from SCD. Moreover, it was the hematologists and SCD specialists that expressed the highest comfort levels in prescribing opioids and managing the risk of SCD complications with hydroxyurea.

However, more than one-third of providers did not feel that they thoroughly addressed the needs of their patients with SCD. In the same vein, one-third of providers were not aware of the 2014 National Heart Lung and Blood Institute (NHLBI) treatment guidelines for SCD.

This lack of awareness of the NHLBI treatment guidelines may likely be a barrier to care. The NHLBI guidelines are available to support providers’ clinical decision-making. They include treatment modalities for children, adolescents, and adults, and they can help guide providers on when to utilize hydroxyurea and blood transfusion therapy. The expert panel responsible for making the guidelines includes providers from different specialties, including hematology, transfusion medicine, gynecology, and psychiatry.

In closing, as evidenced by the SCDIC’s survey, the treatment of SCD can be influenced by provider specialty, care setting, and knowledge of NHLBI guidelines. Providers of all specialties may have the opportunity to provide care to patients with SCD. Therefore, access and awareness of the proper treatment guidelines are vital. Improving awareness about these guidelines may help improve the routine use of hydroxyurea, appropriate pain relievers, and mental health treatments [1].

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[1] Smeltzer, M. P., Howell, K. E., Treadwell, M., Preiss, L., King, A. A., Glassberg, J. A., Tanabe, P., Badawy, S. M., DiMartino, L., Gibson, R., Kanter, J., Klesges, L. M., & Hankins, J. S. (2021). 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. BMJ Open, 11(11), e050880. https://doi.org/10.1136/bmjopen-2021-050880