title: Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease.
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.
  
  
  METHODS
  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.
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia.
authors.forename: Lauren C
authors.initials: LC
authors.lastname: Daniel
authors.affiliation: Division of Oncology, The Children's Hospital of Philadelphia Department of Biostatistics and Epidemiology, Perelman School of Medicine of the University of Pennsylvania.
authors.forename: Yimei
authors.initials: Y
authors.lastname: Li
authors.affiliation: Department of Psychology, University of South Carolina.
authors.forename: Kelsey
authors.initials: K
authors.lastname: Smith
authors.affiliation: Department of Psychiatry, Drexel University College of Medicine Division of Hematology, St. Christopher's Hospital for Children.
authors.forename: Reem
authors.initials: R
authors.lastname: Tarazi
authors.affiliation: Department of Psychiatry, Drexel University College of Medicine Division of Hematology, St. Christopher's Hospital for Children.
authors.forename: M Renee
authors.initials: MR
authors.lastname: Robinson
authors.affiliation: Division of Neonatology, The Children's Hospital of Philadelphia Department of Psychiatry, Perelman School of Medicine of the University of Pennsylvania.
authors.forename: Chavis A
authors.initials: CA
authors.lastname: Patterson
authors.affiliation: Division of Hematology, The Children's Hospital of Philadelphia Department of Pediatrics, Perelman School of Medicine of the University of Pennsylvania, and.
authors.forename: Kim
authors.initials: K
authors.lastname: Smith-Whitley
authors.affiliation: Division of Hematology/Oncology, Thomas Jefferson University.
authors.forename: Marie
authors.initials: M
authors.lastname: Stuart
authors.affiliation: 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.
authors.forename: Lamia P
authors.initials: LP
authors.lastname: Barakat
mesh_terms: D000124:Achievement; D000755:Anemia, Sickle Cell / Q000523:psychology*; D017028:Caregivers; D002648:Child; D004493:Education; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007858:Learning; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D012574:Schools; D012917:Social Adjustment; D011795:Surveys and Questionnaires
keywords: family-based intervention; randomized controlled trial; sickle cell disease