Assessment of Psycho-Educational Needs in a Clinical Sample of Children With Sickle Cell Disease

Abstract

Abstract Sickle cell disease (SCD) is associated with impaired cognitive and academic functioning, yet prevalence rates of educational needs and accommodations are not known. The Hematology-Oncology Psycho-Educational Needs Assessment was administered to 72 parents of youth, ages 5 to 17, with SCD. Half of the parents identified concerns about their children's learning; however, only 36% had undergone testing for learning problems, and only 26% had individualized education plans. Many parents (33%) reported concerns about attention/memory, and 36% of youth had failed a grade. Of 33 participants referred for neuropsychological evaluation, only 13 completed testing, which revealed below-average IQ and achievement scores. Considerable morbidity was reported; one third of participants missed over 20 school days per year, and 42% reported disease-related difficulties participating in school. Many youth with SCD present cognitive, academic, and functional difficulties, for which universal screening may promote earlier detection and psycho-educational intervention.