Abstract
BACKGROUND: Hematopoietic stem cell transplantation (HSCT) can be challenging to pediatric recipients and their families. Little is known about the recipients' psychological status as they initiate treatment and in the year afterwards. The purpose of this study is to describe the psychological status of 107 pediatric HSCT recipients from their parents' perspective, and to compare reports from parents and children in a subset of 55 children. We hypothesized that there would be discrepancies between parent and child report of child distress. PROCEDURE: Multi-site, prospective study of eligible child participants and their parents who completed selected modules from the Structured Clinical Interview for DSM-IV-TR, Childhood Version (KID-SCID) the month before and one year after HSCT. Diagnoses were threshold or subthreshold. RESULTS: According to parents, nearly 30% of children had anxiety disorder both before and after HSCT; approximately half of these met threshold criteria. Agreement between parents and children for anxiety disorders was poor at baseline (κ = -0.18, 95%CI = -0.33, -0.02) and fair at 12 months (κ = 0.31, 95%CI = -0.04, 0.66). Agreement about mood disorders was fair at baseline (10% prevalence, κ = 0.39, 95%CI = -0.02, 0.79) and moderate at 12 months (14% prevalence, κ = 0.41, 95%CI = 0.02, 0.80). CONCLUSIONS: Anxiety (30%) and mood (10-14%) symptoms are common in children both before and after HSCT; parent and child reports of these symptoms do not agree. Input from parents and children is recommended to identify more accurately children who may need additional intervention during and following HSCT.