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Evidence to Improve Care

Sickle Cell Disease

Care for People of All Ages

This quality standard addresses care for children, young people, and adults with sickle cell disease.

See below for a summary of the quality standard or download it for more detailed statements.

Download the Quality Standard

Quality Statement 1: Racism and Anti-Black Racism
People with sickle cell disease (and their families and caregivers) experience care from health care providers within a health care system that is free from racism and anti-Black racism, discrimination, and stigma. Health care providers promote a culture that is compassionate, trauma informed, and respectful of people’s racial/ethnic and cultural backgrounds. They build trust with people with sickle cell disease (and their families and caregivers), work to remove barriers to accessing care, and provide care equitably.

Quality Statement 2: Comprehensive Health Assessment and Care Plan
People with sickle cell disease have a comprehensive health assessment at least annually from an interprofessional care team at a dedicated sickle cell disease centre to develop an individualized, person-centred care plan. The assessment and care plan are documented and shared with the person’s circle of care.

Quality Statement 3: Vaso-occlusive Acute Pain Episodes
People with sickle cell disease who present to an emergency department or hospital with a vaso-occlusive acute pain episode receive a timely pain assessment and clinical assessment. Their treatment begins within 30 minutes of triage or 60 minutes of presentation. Before discharge, they are involved in the development of a plan for continuing to manage their acute pain episode at home. This plan includes symptom management strategies and information on how to access follow-up care and support from health care providers, as needed.

Quality Statement 4: Life-Threatening Acute Complications
People who present to an emergency department or hospital with a potentially life-threatening acute complication of sickle cell disease have their condition and its severity identified through a prompt clinical assessment. Their condition is managed appropriately with an individualized treatment and monitoring plan.

Quality Statement 5: Chronic Complications
People with sickle cell disease are monitored by their local health care team for signs and symptoms of chronic complications of sickle cell disease. People with chronic complications are promptly referred to a dedicated sickle cell disease or other specialized centre for consultation and/or assessment and management of their condition, as needed.

Quality Statement 6: Referral to Health Care Professionals With Expertise in Chronic Pain
People whose quality of life is significantly impacted by chronic pain caused by sickle cell disease are referred to individual health care professionals or a chronic pain centre with expertise in chronic pain related to sickle cell disease and the ability to offer pharmacological and nonpharmacological interventions.

Quality Statement 7: Psychosocial Assessment, Information, and Support
People with sickle cell disease (and their families and caregivers, where appropriate) have regular psychosocial assessments to identify any psychosocial needs or barriers to accessing care. Those with unmet psychosocial needs are offered information and support to address these needs.

Quality Statement 8: Transition From Youth to Adult Health Care Services
Young people with sickle cell disease have a designated health care provider for the transition from youth to adult health care services. This provider works with the young person (and their parents and caregivers, where appropriate) to coordinate their care and provide support throughout the transition process. The provider continues to provide support until the young person (and their parents and caregivers, where appropriate) confirms that the transition is complete.

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