Article

Quality of Life Research

, Volume 14, Issue 4, pp 1087-1098

Health state preference scores of children with spina bifida and their caregivers

  • John M. TilfordAffiliated withDepartment of Pediatrics, University of Arkansas for Medical Sciences Email author 
  • , Scott D. GrosseAffiliated withNational Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
  • , James M. RobbinsAffiliated withDepartment of Pediatrics, University of Arkansas for Medical Sciences
  • , Jeffrey M. PyneAffiliated withCenter for Mental Health care and Out comes Research, Central Arkan sas Veterans Health care System, University of Arkan sas for Medical Sciences
  • , Mario A. ClevesAffiliated withDepartment of Pediatrics, University of Arkansas for Medical Sciences
  • , Charlotte A. HobbsAffiliated withDepartment of Pediatrics, University of Arkansas for Medical Sciences

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Abstract

Cost-effectiveness evaluations of interventions to prevent or treat spin a bifida require quality of life information measured as preference scores. Preference scores of care givers also may be relevant. This study tested whether the preference scores of children with spin a bifida and their care givers would decrease as disability in the child increased. Families of children aged 0–17 with spin a bifida (N=98) were iden ti fied using a birth defect surveillance sys tem in the state of Arkansas. Primary care giv ers of chil dren with spin a bifida identified other families with an unaffected child (N=49). Preference scores for child health states were determined using the Health Utilities Index – Mark 2 (HUI2). Care giver preference scores were determined using the Quality of Well-Being (QWB) scale. Children with spin a bifida were categorized into three disability levels according to the location of the child’s lesion. Mean preference scores declined for both affected children and the primary care giver as disability in the child increased. In multivariate analysis, the preference score of the child was a significant and positive predictor of the primary care giver’s preference score. A more modest association was found for care giver health preference scores by lesion location. The findings can inform cost-effec tiveness evaluations of interventions to treat or prevent spin a bifida.

Keywords

Care giver quality of life Economic evaluation Preference-weighted health states Spin a bifida