title: Health-related quality of life among children with acute lymphoblastic leukemia.
abstract: BACKGROUND
  The objective was to quantify the health-related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation.
  
  
  METHODS
  Two types of subjects were included: ALL patients 5 plus years old in a multi-center clinical trial and general population control groups. Patients were assessed during all four major phases of active treatment and approximately 2 years after treatment. Health status and HRQL were measured using HEALTH UTILITIES INDEX® (HUI®) Mark 2 (HUI2) and Mark 3 (HUI3). HRQL scores were used to calculate quality-adjusted life years (QALYs). Excess disability rates identified attributes for remediation.
  
  
  RESULTS
  HUI assessments (n = 749) were collected during the five phases. Mean HRQL increased from induction through the post-treatment phase (P < 0.001). There were no significant demographic or treatment effects on HRQL, except for type of asparaginase during continuation therapy (P = 0.005 for HUI2 and P = 0.007 for HUI3). Differences in mean HRQL scores between patients and controls were important (P < 0.001) during the active treatment phases but not during the post-treatment phase. Relative to controls, patients lost approximately 0.2 QALYs during active treatment. Disability was evident in mobility/ambulation, emotion, self-care and pain, and declined over time.
  
  
  CONCLUSIONS
  Patients with ALL experienced important but declining deficits in HRQL during active treatment phases: Equivalent to losing approximately 2 months of life in perfect health. HRQL within the 2-years post-treatment phase was similar to controls. The policy challenge is to develop new treatment protocols producing fewer disabilities in mobility/ambulation, emotion, self-care, and pain without compromising survival.
authors.affiliation: Centre for Health Economics and Policy Analysis, and Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada. furlongb@mcmaster.ca
authors.forename: William
authors.initials: W
authors.lastname: Furlong
authors.forename: Charlene
authors.initials: C
authors.lastname: Rae
authors.forename: David
authors.initials: D
authors.lastname: Feeny
authors.forename: Richard D
authors.initials: RD
authors.lastname: Gelber
authors.forename: Caroline
authors.initials: C
authors.lastname: Laverdiere
authors.forename: Bruno
authors.initials: B
authors.lastname: Michon
authors.forename: Lewis
authors.initials: L
authors.lastname: Silverman
authors.forename: Stephen
authors.initials: S
authors.lastname: Sallan
authors.forename: Ronald
authors.initials: R
authors.lastname: Barr
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000628:therapy*; D011788:Quality of Life; D019057:Quality-Adjusted Life Years; D016032:Randomized Controlled Trials as Topic; D011795:Surveys and Questionnaires