Correlates of Caregiver Preference Scores in a Child Disability Model

Childhood disabilities can affect the health of caregivers and other family members. Interventions to treat or prevent disabilities in childhood thus have the potential to generate family or caregiver spillover effects that should be accounted for in economic evaluations from the societal perspective. Yet, little is known about how specific child disabilities can affect preference-weighted health outcomes of caregivers. Data describing relationships between child disabilities and caregiver preference scores can provide an indication as to the importance of caregiver spillover effects in economic evaluations. This paper describes data on preference-weighted health outcomes of caregivers in relation to specific characteristics of children with three disabilities: spina bifida, traumatic brain injury, and hearing loss. Caregiver preference scores were generated with generic instruments including the Health Utilities Index (HUI3), the Quality of Well-being (QWB) scale, and the SF-6D. In all three disabilities, specific health conditions of the child were identified that correlated strongly with the preference-weighted health outcomes of the caregiver, but differed according to the type of disability. In analyses of deaf and hearing impaired children, caregiver preference scores declined linearly with reductions in the child's hearing ability and speech outcomes which were also correlated with increased emotional problems. In analyses of children with traumatic brain injury and spina bifida, caregiver preference scores declined linearly with increased perception of child pain. Such a relationship was evident at 3 months post discharge following a hospitalization for a traumatic brain injury. In all three models of child disability, caregiver preference scores were positively correlated with self-reported hours of sleep. Findings from the presentation will be used to highlight how caregiver spillover effects might be incorporated in economic evaluations involving childhood disabilities with cochlear implantation as an example. Avenues for additional research and survey design also will be discussed