The measure called EQ-5D-Y-5L was developed by a European quality of life research group called EuroQol). The measure is short (5 questions), commonly used, and well tested questionnaire. It measures health-related quality of life (HRQoL) in children and young people.

Most tools that measure quality of life (including EQ-5D-Y-5L) ask about problems and concerns. When questionnaires only look for problems, they might result in some children feeling bad about themselves, raise ethical concerns about how questions are asked, or confuse ill health with having a low quality of life – these are not the same.

It is important when measuring health-related quality of life, that children with life-limiting conditions or complex disabilities can say that they have a good quality of life, if that is true for them.

Measures and assessments that are ‘strengths based’ focus on what people can do, rather than what they cannot. Strengths-based principles in assessment have been a focus in the paediatric and disability literature for some time.

This project aims to:

(a) Explore the views of young people with life-limiting conditions or disability and their parents about the wording of questions in the EQ-5D-Y-5L

(b) Understand the views of children’s health care and disability experts on strengths-based versus problem-based item wording

The goal is to understand whether the items in the measure are worded in ways that support children to report on their quality of life.

This project is funded by EuroQoL and is a collaboration between the Health Economics team within the Melbourne School of Population and Global Health and the Healthy Trajectories research team at the University of Melbourne. The project is led by Professor Kim Dalziel from the Melbourne School of Population and Global Health.