The following specific resources can equip caregivers of children with sickle cell disease.
General clinical information
Canadian Hemoglobinopathy Association (CanHaem)
The Canadian Hemoglobinopathy Association (CanHaem) is a not-for-profit organization devoted to care, education and research on hemoglobin abnormalities (also referred to as hemoglobinopathies) across Canada. Several documents (many of which are available in French) are excellent caregiver resources. Several documents have also been written for patients (e.g., document on hydroxyurea). The Consensus Statement on the Care of Patients with Sickle Cell Disease in Canada (in English only) is a source of information on the management and prevention of various complications.
Canadian Pediatric Society
The Canadian Pediatric Society considers it important for Canadian pediatric health professionals to be familiar with sickle cell disease because of immigration profiles and increased neonatal screening. The Position Statement on Acute complications in children with sickle cell disease aims to inform health professionals about the disease.
Center for Disease Control and Prevention
The Centre for Diseases Control and Prevention (website in English only) is a U.S. science-based, data-driven service organization that protects the public’s health. Their page on sickle cell disease is fairly comprehensive (English only).
St. Jude Children’s Research Hospital
St-Jude Children’s Research Hospital has one of the largest pediatric sickle cell disease programs in the US. Children are treated from birth to 18 years of age. (English only)
National Heart, Lung, and Blood Institute
Section on sickle cell disease (English only)
Opioid Use After First Opioid Prescription in Children With Sickle Cell Disease
Access to the document (English only)
Resources on pain management
Comfort Ability Program
The Comfort Ability Program for Sickle Cell Pain was created by the Boston Children’s Hospital and contains extensive information on the topic of pain management. In English only.
Tout doux
Tout doux aims to put non-pharmacological and pharmacological strategies in place to prevent and manage procedural pain and anxiety in CHU Sainte-Justine patients and is intended for patients and their families as well as health care professionals.
Canadian Pediatric Society
The Canadian Pediatric Society has published several position statements, including :
- Recommendations for procedural sedation in infants, children and adolescents
- Best practices in pain assessment and management for children
- Managing pain and distress in children undergoing brief diagnostic and therapeutic procedures
- Supporting your child through a brief medical procedure
Solutions for Kids in Pain (SKIP)
SKIP’s mission is to improve children’s pain management. Information includes Guidelines and recommendations on pain assessment and management in institutions. Many tools and resources may be consulted here.
Resources and tools on emergency management
CHU Sainte-Justine Emergency Room
Sickle cell disease clinical guide (in French only)
Canadian Hemoglobinopathy Association (CanHaem)Episodes of the EM Cases podcast are in-depth round table discussions on essential topics in emergency medicine with guest experts (in English only). Episode 68 talks about emergency management of sickle cell disease.