Lauren C Daniel1, Yimei Li2, Kelsey Smith3, Reem Tarazi4, M Renee Robinson4, Chavis A Patterson5, Kim Smith-Whitley6, Marie Stuart7, Lamia P Barakat8. 1. Division of Oncology, The Children's Hospital of Philadelphia. 2. Division of Oncology, The Children's Hospital of Philadelphia Department of Biostatistics and Epidemiology, Perelman School of Medicine of the University of Pennsylvania. 3. Department of Psychology, University of South Carolina. 4. Department of Psychiatry, Drexel University College of Medicine Division of Hematology, St. Christopher's Hospital for Children. 5. Division of Neonatology, The Children's Hospital of Philadelphia Department of Psychiatry, Perelman School of Medicine of the University of Pennsylvania. 6. Division of Hematology, The Children's Hospital of Philadelphia Department of Pediatrics, Perelman School of Medicine of the University of Pennsylvania, and. 7. Division of Hematology/Oncology, Thomas Jefferson University. 8. Division of Oncology, The Children's Hospital of Philadelphia Department of Pediatrics, Perelman School of Medicine of the University of Pennsylvania, and barakat@email.chop.edu.
Abstract
OBJECTIVE: Tested a family-based group problem-solving intervention, "Families Taking Control," (FTC) to improve school functioning and health-related quality of life (HRQL) for children with sickle cell disease. METHOD: Children and caregivers completed questionnaires assessing HRQL and school functioning and children completed performance-based measures of IQ and achievement at baseline and 6 months later. Families were randomized to the intervention (FTC, n = 42) or delayed intervention control (DIC, n = 41) group. FTC involved a full-day workshop followed by 3 booster calls. RESULTS: There were no differences between FTC completers (n = 24) and noncompleters (n = 18). FTC group (n = 24) and DIC group (n = 38) did not differ significantly on primary outcomes at follow-up: number of formal academic and disease-related accommodations, individualized education plan/504 service plan, school absences, school HRQL, or academic skills. CONCLUSIONS: Although families found FTC to be acceptable, there were no intervention effects. Challenges of the trial and implications for future research are discussed.
RCT Entities:
OBJECTIVE: Tested a family-based group problem-solving intervention, "Families Taking Control," (FTC) to improve school functioning and health-related quality of life (HRQL) for children with sickle cell disease. METHOD:Children and caregivers completed questionnaires assessing HRQL and school functioning and children completed performance-based measures of IQ and achievement at baseline and 6 months later. Families were randomized to the intervention (FTC, n = 42) or delayed intervention control (DIC, n = 41) group. FTC involved a full-day workshop followed by 3 booster calls. RESULTS: There were no differences between FTC completers (n = 24) and noncompleters (n = 18). FTC group (n = 24) and DIC group (n = 38) did not differ significantly on primary outcomes at follow-up: number of formal academic and disease-related accommodations, individualized education plan/504 service plan, school absences, school HRQL, or academic skills. CONCLUSIONS: Although families found FTC to be acceptable, there were no intervention effects. Challenges of the trial and implications for future research are discussed.
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