The National Alliance of Sickle Cell Centers has introduced new standards to improve early detection and management of neurodevelopmental issues in children and adults with sickle cell disease, promising more consistent and equitable care across states.
Sickle cell disease care is set for a more standardised approach to cognitive and developmental monitoring, after the National Alliance of Sickle Cell Centers released new guidance aimed at closing gaps that clinicians say have left families with highly uneven care from state to state. The recommendations call for earlier, repeated checks for neurodevelopmental and neurocognitive problems across the lifespan, reflecting concern that difficulties with processing speed, executive function and reasoning can be missed for years without routine surveillance.
Alyssa Schlenz, a paediatric neuropsychologist at Children’s Hospital Colorado, told Healio that current national guidance does not give centres enough direction on how to identify and respond to cognitive risk. The new standards are designed to bring more consistency to practice and build on the American Society of Hematology’s 2020 guidance on cerebrovascular risk and common complications. The executive summary published in PubMed says the work was developed by the NASCC Neurocognitive Workgroup to improve identification and management of developmental and cognitive challenges across the lifespan.
The recommendations set out a layered approach that begins in infancy. They call for annual signalling questions from 9 months of age, simplified questions about developmental delay in early childhood and, once a child reaches school age, questions about school performance and behaviours that may suggest inattention, hyperactivity or impulsivity. Screening is recommended at 9, 18 and 30 months, with autism screening at 18 and 24 months or whenever there are concerns about development. For school-age children, cognitive screening is advised about every 5 years from the start of primary school, with social-emotional screening in the early years and clear pathways for families to access support.
The guidance also recommends developmental or neuropsychological evaluation when suspicion is high and at least one neuropsychological assessment before transfer to adult care. Schlenz said early detection matters because many children with sickle cell disease who need support are identified too late, while Arianna Martin, a paediatric neuropsychologist at Children’s Hospital Colorado, said serial assessments help clinicians spot subtle changes that a single visit might miss. The workgroup also stressed that care should be adapted to local resources, with collaboration among sickle cell teams, primary care clinicians, psychologists and occupational therapists to help families understand results and act on them.
Disclaimer: This content is for informational purposes only and is not intended to be a substitute for professional medical judgment, advice, diagnosis, or treatment.
