![Diagram][1] Improving outcomes for children and young adults with cancer requires a different model, ethos and approach to clinical trials and the patient. These experiences and ways of working in childhood cancer are of broader relevance to the cancer care community. **Changing population** - Whilst emphasis is often placed on cancer in older age populations, it needs to be remembered that cancer affects all age groups including children. Therefore age may be important in determining care options and in post-cancer life. *"If you are dealing with the average cancer patient who is potentially quite elderly, and you are maybe not necessarily trying to just cure them, but extend their life a little bit, the things you measure are not necessarily the same as would be important to 30 year olds that you are hoping to cure, who then have another 40 years of life ahead of them."* *"We’re very interested in the side effects of treatment, because obviously, the peak age for childhood leukaemia is age two to five. And, you know, 90% of those children or nearly 93% now have been cured. And, you know, you hope when you cure them, they’re going to live to be like 80 or 90 years old. And so, you’ve got to be very careful not only to cure the leukaemia, but that you haven’t done damage to their normal body cells that, okay, might be alright, for 10 years or 20 years, but then might cause problems as they get older. So we have quite a different perspective in that way."* **Redefining quality of life, and how it’s measured** - Cancer treatments are associated with side effects that can have both short term and long term impacts on a patients quality of life. Quality of life is highly personal and complex. With increased success in therapies, this aspect of cancer care is critical. *"It does need some innovative ideas about how to fund these things, and how to capture side effects and quality of life information in a rigorous way. These are really important to care for patients. And there’s a lot of problems around that. Because quality of life is very, very subjective. Whether life is good or bad is not really easily mapped on to anything objective. And so you can have someone you look at externally who can seem incredibly disabled and have very poor quality of life, who can say, “my life is great”, and vice versa, someone who seems to be functioning perfectly well, that says “my quality of life is awful”. So learning how to measure that is something we need to think about."* **Side effects** - Understanding and reducing side effects of treatments is an important yet often underrepresented aspect of cancer research. Side effects impact quality of life and bring a human-centred approach to clinical trial development. *"I think (side effects) are a really, really underappreciated thing by oncologists, and doctors in general. The side effects of treatment are really important to patients. It’s probably as important as curing their cancer, the things they have to live with, and I think it’s quite easy sometimes as a doctor to see something clinic and say, Alright, I’m going to prescribe you these medicines, off you go home, and you don’t see what they’re having to deal with it at home. And, I think how cancer research is organized at the moment, we’re very bad at cataloguing and understanding side effects, that traditional clinical trials way of doing it of filling in these adverse event forms and things. We know from auditing trials, they’re incredibly inaccurate. So we both massively overreport, inaccurately report some types of side effects that are easy to measure, like, you know, blood test abnormalities or something and they massively under-report other areas. And a lot of the time, they are just plain wrong, you know, once side effects are reported and actually we go back to patient notes, it was something different. So our current mechanisms for that are really poor."* You can view the full enhanced report here: https://osf.io/azg8e/ You can download the full enhanced report here: https://osf.io/azg8e/download [1]: https://mfr.de-1.osf.io/export?url=https://osf.io/vwsmx/?direct%26mode=render%26action=download%26public_file=False&initialWidth=560&childId=mfrIframe&parentTitle=OSF+%7C+childhoodcancer.jpg&parentUrl=https://osf.io/vwsmx/&format=2400x2400.jpeg