Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease

J Pediatr Psychol. Nov-Dec 2015;40(10):1085-94. doi: 10.1093/jpepsy/jsv063. Epub 2015 Jun 30.


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.

Keywords: family-based intervention; randomized controlled trial; sickle cell disease.

Publication types

  • Randomized Controlled Trial
  • Research Support, N.I.H., Extramural

MeSH terms

  • Achievement
  • Anemia, Sickle Cell / psychology*
  • Caregivers
  • Child
  • Education*
  • Family / psychology*
  • Female
  • Humans
  • Learning
  • Male
  • Quality of Life / psychology*
  • Schools*
  • Social Adjustment*
  • Surveys and Questionnaires