Defining and measuring what matters: quality of life for children with disabilities

The quality of life of children with disabilities improves when health systems move beyond survival-oriented biomedical interventions and metrics, and promote participation and wellbeing. Quality of life should be considered and measured through the experiences and views of the child, ensuring that judgements about what a meaningful life looks like are made by those people for whom these tools are designed. This Viewpoint provides examples of how health professionals and health systems can expand their interest beyond impairment-focused care to partner with families, adopt practices that promote children's own perspectives on what matters most in their lives, and create disability-inclusive environments. Central to this shift is recognising that quality of life should reflect what children and their families value, rather than offering external judgements based on concepts of normality or function. Doing so will enable everyone involved in childhood disability to align clinical practice, measurement, and policy, as well as ultimately place value on the quality of life of all children.