Research and Data Insights
The article below seeks to identify best practices and lessons learned to improve healthcare accessibility for pediatric patients with sickle cell disease and their families.
Six key themes emerged:
- Full reimbursement of invisible costs incurred by caregivers.
- Clustering of healthcare appointments on the same day to allow patients to see all necessary specialists without requiring frequent hospital visits.
- Organization of care based on shared care principles, delivering specialized services as close as possible to the patient’s home without compromising quality.
- Optimization of verbal and written communication methods, with special consideration for families facing language barriers, low literacy, or both.
- Improved use of eHealth services tailored to users’ health literacy levels, including accessible mobile communication between healthcare professionals and caregivers of children with SCD.
- Increased knowledge and awareness of sickle cell disease among key stakeholders and the general public to ensure that both preventive and acute care measures are understood and upheld across all healthcare settings.
The article below discusses a workshop developed to train healthcare professionals in the essential skills needed to establish clinical centers dedicated to managing adults living with sickle cell disease.
The authors define what constitutes a sickle cell disease center, outline the key components of a comprehensive adult sickle cell disease program, and describe various models of care. They also highlight the benefits of comprehensive adult sickle cell disease programs, including improved health outcomes such as reduced acute care visits and hospitalizations.
Myth vs. Fact
Myth: Comprehensive sickle cell disease care can be effectively managed by a single provider without the need for a multidisciplinary or team-based approach.
Fact: Comprehensive sickle cell disease care requires a programmatic, multidisciplinary, team-based approach.