Advances in treatment and care result in the majority of children with serious diseases surviving to adulthood.1 However, many experience long-term attendant health costs. As these children move through life, it is vital to optimise their health to allow them to live the life they want and be fully participatory members of society.

The WHO defines health as a ‘state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’. This demonstrates that positive social outcomes are central to good health. Governments have a responsibility to provide adequate health and social measures to achieve this.2 One key theme of the Royal College of Paediatrics and Child Health 2040 Charter is the ‘whole child approach’ emphasising the need to look beyond physical health alone.

Social outcomes can be defined as ‘a set of social capacities linked to personal functioning and functioning in social structures such as personal social groups and society overall’.3 This provides us with a conceptual understanding of the term, but no breakdown of what the component ‘outcomes’ might be.

These ‘outcomes’ potentially include broad categories which are relatively easy to describe and measure, such as educational and occupational outcomes. They additionally include areas such as independence, autonomy and relationships, which are more complicated to define but of equal importance.

Social outcomes are important due to their impact at individual, familial and societal levels. They are key aspects of life that help to provide a person with happiness, …