title: Health-related quality of life and utility scores in short-term survivors of pediatric acute lymphoblastic leukemia.
abstract: OBJECTIVE
  Increase of survival in pediatric acute lymphoblastic leukemia (ALL) has made outcomes such as health-related quality of life (HRQL) and economic burden more important. To make informed decisions on the use of healthcare resources, costs as well as utilities need to be taken into account. Among the preference-based HRQL instruments, the Health Utilities Index (HUI) is the most employed in pediatric cancer. Information on utility scores during ALL treatment and in long-term survivors is available, but utility scores in short-term survivors are lacking. This study assesses utility scores, health state, and HRQL in short-term (6 months to 4 years) ALL survivors.
  
  
  METHODS
  Cross-sectional single-center cohort study of short-term ALL survivors using HUI3 proxy assessments.
  
  
  RESULTS
  Thirty-three survivors (median 1.5 years off treatment) reported 14 unique health states. The majority of survivors (61 %) enjoyed a perfect health, but 21 % had three affected attributes. Overall, HRQL was nonsignificantly lower compared to the norm, although the difference was large and may be clinically relevant. Cognition was significantly impaired (p = 0.03).
  
  
  CONCLUSIONS
  Although 61 % of short-term survivors of ALL report no impairment, the health status of the other patients lead to a clinically important impaired HRQL compared to norms. Prospective studies assessing utility scores associated with pediatric ALL should be performed, enabling valid and reliable cost-utility analyses for policy makers to make informed decisions.
authors.affiliation: Department of Pediatrics, VU University Medical Center Amsterdam, P.O. Box 7057, 1007 MB, Amsterdam, The Netherlands. litsenburg@vumc.nl
authors.forename: Raphaële R L
authors.initials: RR
authors.lastname: van Litsenburg
authors.forename: Jaap
authors.initials: J
authors.lastname: Huisman
authors.forename: Hein
authors.initials: H
authors.lastname: Raat
authors.forename: Gertjan J L
authors.initials: GJ
authors.lastname: Kaspers
authors.forename: Reinoud J B J
authors.initials: RJ
authors.lastname: Gemke
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006240:Happiness; D006304:Health Status; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010372:Pediatrics; D054198:Precursor Cell Lymphoblastic Leukemia-Lymphoma / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life; D019057:Quality-Adjusted Life Years; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*