title: Clinical outcomes and health-related quality of life (HRQOL) following haemopoietic stem cell transplantation (HSCT) for paediatric leukaemia.
abstract: BACKGROUND
  Haemopoietic stem cell transplantation (HSCT) is a life-saving but intensive procedure associated with potentially severe adverse late effects. We aimed to determine morbidity and health-related quality of life (HRQOL) in a sample of survivors aged 8-18 years at least 1 year post HSCT for paediatric acute leukaemia, compared with a non-transplanted group of survivors matched for age, gender, initial disease and time since treatment.
  
  
  METHODS
  Families (N = 54; HSCT n= 29) recruited from four UK centres completed measures of child behaviour and school attendance, HRQOL and finances. Mothers completed measures of their own well-being. Clinical outcome data were extracted from medical records.
  
  
  RESULTS
  Children in the HSCT group had significantly more late effects and had received more tests for vision, bone, dental and skin health, and thyroid, lung, and gonadal function than the non-transplanted group. HRQOL scores for the HSCT group were significantly lower in all domains compared with the non-transplanted group and population norms, but were not significantly related to clinical indices. Mothers in the HSCT group had significantly poorer mental well-being than population norms.
  
  
  CONCLUSIONS
  Significant morbidity and compromised HRQOL was found in survivors of HSCT. The burden of caring for a child after HSCT has a continuing toll on mothers' well-being.The importance of counselling families about possible long-term consequences is emphasized.
authors.affiliation: Department of Psychology, University of Sheffield, Sheffield, UK. s.a.clarke@sheffield.ac.uk
authors.forename: S-A
authors.initials: SA
authors.lastname: Clarke
authors.forename: R
authors.initials: R
authors.lastname: Skinner
authors.forename: J
authors.initials: J
authors.lastname: Guest
authors.forename: P
authors.initials: P
authors.lastname: Darbyshire
authors.forename: J
authors.initials: J
authors.lastname: Cooper
authors.forename: A
authors.initials: A
authors.lastname: Vora
authors.forename: T
authors.initials: T
authors.lastname: Urquhart
authors.forename: M
authors.initials: M
authors.lastname: Jenney
authors.forename: J
authors.initials: J
authors.lastname: Powell
authors.forename: C
authors.initials: C
authors.lastname: Eiser
mesh_terms: D000293:Adolescent; D016022:Case-Control Studies; D002648:Child; D005260:Female; D006304:Health Status; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007938:Leukemia / Q000453:epidemiology / Q000601:surgery*; D008297:Male; D009017:Morbidity; D009035:Mothers / Q000523:psychology; D011788:Quality of Life; D012307:Risk Factors; D017741:Survivors; D013997:Time Factors; D006113:United Kingdom / Q000453:epidemiology