Tech #827: Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD™)
The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD™) is a rigorously validated instrument that captures caregivers’ perspectives on the health, well-being, and daily care needs of children with severe developmental disabilities. It enables meaningful assessment of quality of life and caregiving burden, supporting clinical decision-making, program evaluation, and use as an outcome measure in research and clinical trials.
Technology Reference Number
#827
Inventors
IP&C Contact
Therapeutic Area
Developmental Disabilities
Category
Health Outcome Measure
Keywords
CPCHILD™, developmental disabilities, caregiver-reported outcomes, quality of life measurement, pediatric assessment tool, caregiving burden, clinical outcomes measurement, rehabilitation
Invention Description
Children with severe developmental disabilities are often dependent on parents or caregivers for much of their daily needs. These children often have multiple co-morbid conditions which can have a significant impact on their overall health, comfort, their functional and quality of life.
Caring for a child with a severe developmental disability can be challenging and can also have an impact on the life of the caregivers and the family as a whole. These children are often subjected to interventions that are aimed at preserving or improving their health, comfort and quality of life and to facilitate caregiving.
To date there have been no validated instruments to measure these phenomena, which have been identified as priorities of caregivers of these children. Consequently, the evidence that these interventions are effective in achieving these meaningful outcomes remains unclear. The Caregiver Priorities project was initiated to address this problem and led to the development and validation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD™) questionnaire. CPCHILD™ questionnaire underwent a number of studies to evaluate its reliability and validity.
These studies have demonstrated that the CPCHILD™ is a reliable and valid measure of caregivers’ perspectives on the health status, comfort, well-being, and ease of caregiving of children with severe developmental disabilities and is a useful proxy measure of the health-related quality of life of these children.
Advantages
- 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.
- CPCHILD™ could also be valuable in planning and evaluating programs of rehabilitation and as an outcome measure in clinical trials.
- CPCHILD™ may help health care providers to gain a deeper understanding of the evolving needs of children and families who are living with a severe disability.
Additional Information
Available in various languages.
