Sickle cell disease is one of the most common inherited red blood cell disorders. It mostly affects racialized people, particularly those who identify as Black. The disease can lead to serious health conditions including infection, stroke, organ damage, and acute and chronic pain.
In January 2023, Ontario Health released (see Sickle Cell Disease section) the sickle cell disease quality standard for health care providers, patients, and families and caregivers containing a set of statements outlining what high-quality care looks like for people with sickle cell disease. The quality standard addresses screening for and the prevention of complications, the assessment and management of acute and chronic complications, and the use of disease-modifying therapies. It applies to all pediatric and adult health care settings (including hospitals, emergency departments, urgent care clinics, and primary care, specialist care, and home and community care settings). Although many of the statements may apply to pregnant people, the quality standard does not directly address the management of sickle cell disease in pregnancy. The standard also includes indicators to monitor the progress being made to improve care for people with sickle cell disease.
To support the implementation of the sickle cell disease quality standard by organizations providing direct care for people with sickle cell disease, the first version of an implementation toolkit [disponible en français] has been developed. The toolkit provides suggested change ideas, resources and tools for each of the quality statements where emergency departments are the main audience. This toolkit will be updated regularly based on user feedback and input.
If you have questions, comments or feedback please contact: QualityStandards@OntarioHealth.ca.
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