The Reliability and Validity of the CPCHILD in Children with Holoprosencephaly (HPE) or a Related Brain Malformation

Children with holoprosencephaly (HPE) and severe brain malformations undergo expensive treatments to improve their health and quality of life, yet there are no valid and reliable measures to assess quality of life in children with severe cerebral palsy. The purpose of this study is to investigate the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD©) as a measure of health-related quality of life (HRQOL), functional status, and caregiver burden in children with severe cerebral palsy (CP) secondary to holoprosencephaly (HPE) or a related brain malformation. this is a cross-sectional study in which the CPCHILD© questionnaire will be administered to parent caregivers of children two through 17 years of age with holoprosencephaly (HPE) or a related brain malformation. The reliability, face and content validity, and construct validity of the CPCHILD© in children with CP within the 5-18 year age range has been established (Narayanan et al, 2006), but there is no literature investigating its reliability and validity within a population of children with severe brain malformations. The tool has been pilot tested on children with severe cerebral palsy and complex care needs as young as age two, but generalizability to this younger age range is not yet established. Including children aged two through four years in our study will further contribute to the psychometric properties of this tool within this age group. The CPCHILD© may help clinicians to identify areas that are impairing a child's quality of life, determine what is most important to the child and caregiver, and monitor the child's progress in a way that is meaningful to the family.

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