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Measuring quality adjusted life years in children with autism spectrum disorders

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Autism is a behavioral condition defined by deficient social interaction, language and communication, and play. Children with autism can exhibit a number of behaviors including severe tantrums, noncompliance, destructiveness, and self-injury. They may require less sleep and have frequent awakenings during the night. Successful interventions to treat the symptoms of ASD can improve the quality of life of children with ASDs as well as their family members. Early behavioral interventions have the most potential to improve symptoms in children with ASDs, yet are costly with considerable uncertainty regarding their cost-effectiveness. Research to measure the cost-effectiveness of interventions for the treatment of children with ASDs is lacking. The primary goal of this proposal is to investigate methods for measuring quality adjusted life years (QALYS) for cost-effectiveness analysis of interventions to treat children with ASDs. In particular, we are interested in whether generic instruments for describing QALYS as proposed by the Public Health Service can capture these effects. Our primary hypothesis is that generic instruments for measuring QALYS will be sensitive to variations in ASD-related symptoms among children with ASDs. We also examine whether family effects can be measured with generic QALY instruments. Failure to include family QALYS in cost-effectiveness analyses of interventions to treat children with ASDs can bias cost-effectiveness ratios. We plan to test our hypotheses using a sample of children with ASDs participating in two sites of the Autism Treatment Network. The investigators for this proposal have developed a research agenda to quantify child and caregiver health in relation to child disabilities. We seek to further this research agenda by i) Evaluating the sensitivity of alternative generic instruments for preference-weighting health outcomes (measuring QALYS) in children with ASDs;ii) Determining whether caregiver QALYS should be incorporated into cost-effectiveness evaluations of interventions to treat children with ASDs;and iii) Evaluating the psychometric properties of generic instruments for measuring QALYS in children with ASDs using qualitative and quantitative methods. Findings from the study will improve methods to accurately assess the cost-effectiveness of interventions to treat children with ASDs and assist in the translation of experimental findings into evidence-based policy for decision making.

PUBLIC HEALTH RELEVANCE: Autism spectrum disorders (ASDs) are characterized by impairments in social skills, communication, and cognitive and behavioral functioning. Successful interventions for children with ASDs thus have the potential to not only affect outcomes of the child, but may include substantial health benefits for the family. Guidelines for evaluating the cost-effectiveness of services recommend using the cost per quality adjusted life year (QALY) gained. To date, no studies have attempted to evaluate whether instruments to measure QALYS in children with ASDs are sensitive to the condition. In addition, research is needed to account for family effects in cost- effectiveness analysis. Despite the potential for informing resource allocation to treatment of children with ASDs, methods and data for measuring QALYS in this population are lacking.

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