title: Health-Related Quality of Life in Survivors of High-Risk Neuroblastoma After Stem Cell Transplant: A National Population-Based Perspective.
abstract: This study aimed to estimate the burden of morbidity, in terms of health-related quality of life (HRQL), in survivors of high-risk neuroblastoma (NBL) after myeloablative chemotherapy followed by autologous hematopoietic stem cell transplant (HSCT).
  
  
  
  A national population-based survey was undertaken of survivors of high-risk NBL (N = 99), diagnosed between 1991 and 2010 and treated with HSCT. Parents completed a proxy questionnaire incorporating two HRQL measures, Health Utilities Index (HUI) 2 and 3. Children >12 years of age provided self-assessments. Clinical and demographic data were collected. Independent t-test and one-way analysis of variance were used to assess differences. Comparative data were obtained from previously published work and Statistics Canada's 1998 National Population Health Survey.
  
  
  
  On a scale of 0 (being dead) to 1.0 (perfect health), mean HRQL utility scores were 0.89 (SD = 0.11) in HUI2 and 0.84 (SD = 0.18) in HUI3. Parents reported morbidity in sensation (52.5%), pain (30.3%), cognition (28.0%), and emotion (24.2%) in HUI2 and in hearing (38.4%), pain (30.3%), cognition (27.3%), and speech (23.2%) in HUI3. HRQL was not significantly different compared to NBL survivors treated without HSCT, but was less than in nontransplanted survivors of acute lymphoblastic leukemia and Wilms tumor, and children in the general population, yet higher than in survivors of brain tumors.
  
  
  
  HRQL is compromised in high-risk NBL survivors treated with and without HSCT. A differential effect on hearing reflects additional exposure to platinum-based chemotherapy. These results should inform long-term care and the development of new therapeutic interventions.
authors.affiliation: Division of Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada.|Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Carol
authors.initials: C
authors.lastname: Portwine
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Charlene
authors.initials: C
authors.lastname: Rae
authors.affiliation: BC Children's Hospital, Vancouver, British Columbia, Canada.
authors.forename: Jeff
authors.initials: J
authors.lastname: Davis
authors.affiliation: Hôpital Sainte-Justine, Montreal, Quebec, Canada.
authors.forename: Pierre
authors.initials: P
authors.lastname: Teira
authors.affiliation: Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Tal
authors.initials: T
authors.lastname: Schechter
authors.affiliation: Alberta Children's Hospital, Calgary, Alberta, Canada.
authors.forename: Victor
authors.initials: V
authors.lastname: Lewis
authors.affiliation: McGill University Health Centre, Montreal, Quebec, Canada.
authors.forename: David
authors.initials: D
authors.lastname: Mitchell
authors.affiliation: Pediatrics and Child Health, University of Manitoba/CancerCare Manitoba, Winnipeg, Manitoba, Canada.
authors.forename: Donna A
authors.initials: DA
authors.lastname: Wall
authors.affiliation: Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Eleanor
authors.initials: E
authors.lastname: Pullenayegum
authors.affiliation: Division of Hematology/Oncology, McMaster Children's Hospital, Hamilton, Ontario, Canada.|Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Ronald D
authors.initials: RD
authors.lastname: Barr
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003071:Cognition; D005260:Female; D006309:Hearing; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects; D006801:Humans; D007223:Infant; D008297:Male; D009447:Neuroblastoma / Q000401:mortality / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life; D017741:Survivors
keywords: neuroblastoma; quality of life; stem cell transplant