title: Health-related quality of life (HRQoL): the impact of medical and demographic variables upon pediatric recipients of hematopoietic stem cell transplantation.
abstract: BACKGROUND
  The trajectory of Heath-Related Quality of Life (HRQoL) in pediatric recipients who have undergone hematopoietic stem cell transplantation (HSCT), as well as the demographic and medical factors that predict HRQoL, has lagged behind the adult research.
  
  
  METHODS
  A prospective longitudinal study of HRQoL in pediatric HSCT recipients was conducted with 95 patients at the Columbia University Medical Center between 2002 and 2009. Both children and parents completed the PedsQL 4.0 prior to HSCT and at days 100, 180, and 365-post-HSCT.
  
  
  RESULTS
  The majority of patients and their parents reported linear improvements in HRQoL in the first year post-transplant; however, a portion of patients were in the at-risk group at each time point. Latent growth modeling was utilized to examine demographic and medical factors that predicted initial HRQoL and its trajectory. Older age at transplant significant predicted lowered HRQoL at baseline for self- and parent-report. Female gender significantly impacted lowered self-reported physical HRQoL over time. Ethnicity was a significant predictor of HRQoL at baseline and over time for self- and parent-report, with African-American children reporting the highest HRQoL; whereas, the worst decline in psychosocial HRQoL was often reported by parents and children of Asian descent.
  
  
  CONCLUSIONS
  This research identifies the significant impact of ethnicity upon HRQoL following pediatric HSCT. It is likely that an individual's pre-morbid experiences and expectations, particularly with regard to culture, behaviors, and values, influence the parent and child's perceptions and expectations of the HSCT process.
authors.affiliation: Oncology Unit, The Children's Hospital, Westmead, North South Wales, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Brice
authors.forename: Rebecca
authors.initials: R
authors.lastname: Weiss
authors.forename: Ying
authors.initials: Y
authors.lastname: Wei
authors.forename: Prakash
authors.initials: P
authors.lastname: Satwani
authors.forename: Monica
authors.initials: M
authors.lastname: Bhatia
authors.forename: Diane
authors.initials: D
authors.lastname: George
authors.forename: James
authors.initials: J
authors.lastname: Garvin
authors.forename: Erin
authors.initials: E
authors.lastname: Morris
authors.forename: Lauren
authors.initials: L
authors.lastname: Harrison
authors.forename: Mitchell S
authors.initials: MS
authors.lastname: Cairo
authors.forename: Stephen A
authors.initials: SA
authors.lastname: Sands
mesh_terms: D000293:Adolescent; D044466:Asian People; D044383:Black People; D002648:Child; D002675:Child, Preschool; D005260:Female; D006402:Hematologic Diseases / Q000601:surgery; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D044465:White People; D001741:Black or African American