Sickle cell disease knowledge and practices among clinicians
Provided by AAFP partner
Sickle cell disease (SCD) is the most prevalent inherited blood disorder in the United States, characterized by the deformation of red blood cells into a crescent or "sickle" shape. This abnormal shape can obstruct blood flow, leading to painful episodes known as pain crises. Despite the significant healthcare needs of individuals with SCD, many face challenges in accessing appropriate care. Primary care physicians (PCPs), pediatricians, and obstetrician-gynecologists (OB-GYNs) are essential partners in managing the health of patients with SCD, as their knowledge of preventive care, pain management, and adherence to clinical practice guidelines directly influences the quality of care provided.
The National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) is dedicated to advancing clinical care for SCD through research and educational initiatives. The NHLBI’s Blood Diseases & Disorders Education Program (BDDEP) aims to enhance awareness of blood disorders, including SCD, and promote blood donation and safety. CVS Health® shares a commitment to ensuring equitable health opportunities for individuals with SCD.
In collaboration, BDDEP and CVS Health® conducted a national survey to assess clinicians' knowledge and perceptions of SCD. The survey aimed to identify knowledge gaps and inform the development of educational resources for both clinicians and patients. It focused on understanding clinicians' awareness of SCD, their sources of information, and the support they require to improve care for patients with this condition.
The survey was conducted online from August 28 to September 13, 2023, targeting clinicians who met specific criteria, including a minimum of two years of practice and experience managing SCD patients. Results indicated that knowledge of SCD was highest among those who frequently treated patients with the disease. However, less than half (48%) reported being knowledgeable about current treatment options, including disease-modifying therapies and gene therapies. While 73% of respondents agreed that opioids are suitable for managing acute pain crises, only 42% reported frequently prescribing them for SCD-related pain.
The survey revealed that PCPs were more likely to engage directly with SCD patients, whereas OB-GYNs tended to refer patients to specialists. Respondents expressed a strong preference for educational resources on SCD treatment guidelines, with 65% favoring journal articles and 64% preferring continuing medical education (CME) programs. Notably, 84% of respondents indicated a desire for information on new medication options and concise guidelines for SCD care.
Overall, the findings highlight the need for enhanced education and resources to support clinicians in delivering effective care for patients with sickle cell disease.
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