title: Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors.
abstract: OBJECTIVE
  To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation.
  
  
  METHODS
  A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated.
  
  
  RESULTS
  Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL.
  
  
  CONCLUSIONS
  Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.
authors: Departments of Medicine, University of Pittsburgh, Pittsburgh, PA; Psychiatry, University of Pittsburgh, Pittsburgh, PA; Clinical and Translational Science, University of Pittsburgh, Pittsburgh, PA; Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, PA. Electronic address: SwitzerGE@upmc.edu.
authors: Galen E
authors: GE
authors: Switzer
authors: Psychiatry, University of Pittsburgh, Pittsburgh, PA.
authors: Jessica
authors: J
authors: Bruce
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: Deidre M
authors: DM
authors: Kiefer
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: Hati
authors: H
authors: Kobusingye
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: Rebecca
authors: R
authors: Drexler
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: RaeAnne M
authors: RM
authors: Besser
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: Dennis L
authors: DL
authors: Confer
authors: Center for International Blood and Marrow Transplant Research, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI.
authors: Mary M
authors: MM
authors: Horowitz
authors: Center for International Blood and Marrow Transplant Research, National Marrow Donor Program/Be The Match, Minneapolis, MN.
authors: Roberta J
authors: RJ
authors: King
authors: Center for International Blood and Marrow Transplant Research, Department of Medicine, Medical College of Wisconsin, Milwaukee, WI.
authors: Bronwen E
authors: BE
authors: Shaw
authors: Sanquin Blood Supply, Department of Donor Services, Amsterdam, The Netherlands; Willem Alexander Children's Hospital, Department for Pediatric Stem Cell Transplantation, Leiden University Medical Center, Leiden, The Netherlands.
authors: Suzanna M
authors: SM
authors: van Walraven
authors: Center for Cancer Research, National Cancer Institute, Bethesda, MD.
authors: Lori
authors: L
authors: Wiener
authors: Department of Psychology, Palo Alto University, Palo Alto, CA.
authors: Wendy
authors: W
authors: Packman
authors: Department of Pediatrics, Texas A&M University, College Station, TX; Department of Landscape Architecture and Urban Planning, Center for Health Systems and Design, Texas A&M University, College Station, TX.
authors: James W
authors: JW
authors: Varni
authors: Division of Hematology, Oncology, and Bone Marrow Transplantation, Children's Hospital Los Angeles, Los Angeles, CA.
authors: Michael A
authors: MA
authors: Pulsipher
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D019727:Proxy; D011788:Quality of Life / Q000523:psychology; D035781:Siblings; D011795:Surveys and Questionnaires; D014019:Tissue Donors / Q000523:psychology*; D014481:United States
keywords: pediatric donation; pediatric quality of life