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Many people might struggle with this exercise. However, this is a task that some willing participants are being asked to do in order to assign to different aspects of children and young people’s (CYP) health-related quality of life (HRQoL). These values will ultimately be used to make decisions about CYP’s healthcare, including whether pediatrics treatments are funded.
It’s important to get this right…right?
“If I saw that my daughter couldn’t walk at all that’d be awful, but she might not have the same understanding of how that would affect her and her quality of life … if you’re funding this you’re looking at long-term difficulties and effects and if you can’t walk that, that impacts children for the rest of their lives which they don’t understand that concept I guess at a young ages, essentially.”
The table below illustrates some of the arguments for and against asking various groups to assign the HRQoL values.
No participants were supportive of the “taxpayer argument”: that adults collectively bear the costs of healthcare so their views should be prioritized.
“I don’t think they would understand. If you said, right, OK, eight years of a good life, or ten years, you might not be able to walk, but you’d get an extra two years if … I don’t think they’d be able to grasp that concept.”
The results suggest to:
- Include both adults and CYP in health state valuation, perhaps using “dyadic” interviews (interviewed together).
- Weigh responses from older children more heavily than younger children.
- Adapt health economics valuation methods to be more inclusive and “child friendly”.
- Disclose the purpose of the research, i.e., that the results will be used to make decisions about children’s healthcare.
- Use the “own” perspective to minimize abstraction and confusion, i.e., ask the interviewee to imagine themselves living in a health state, not someone else.
Whilst the aim of the study was to investigate adults’ viewpoints, it remains an important next step to find out CYP’s opinions on the topic and whether they would want to, or indeed, feel able to be included.
This is a very important topic, and one we would be very happy to discuss in more detail, along with our experience in patient preference research. Please get in touch if you would like to hear more and see if we can work together.
By Emily Boxell
References
1. Powell PA, Rowen D, Keetharuth A, Mukuria C. Understanding UK public views on normative decisions made to value health-related quality of life in children: A qualitative study. Social Science & Medicine. 2024/01/01/ 2024;340:116506. doi:https://doi.org/10.1016/j.socscimed.2023.116506
