8th European Oncology Nursing Society Spring Convention (EONS-8) - Geneva, April 26 - 27, 2012

Developing new support services for young people with cancer

Professor Daniel Kelly – Cardiff university, UK and EONS

I’m delighted to get you in the hot seat talking about the care of teenagers and young adults with cancer because this is a group that is really not thought about very much. What sorts of cancers and what sorts of situations are we talking about?

The cancers are not always unique but they are different, different from cancers in childhood and different from cancers in older age groups. So we tend to see more of the rarer cancers, typical cancers would be around sarcomas, bone cancers, central nervous system, germ cell tumours – cancers that are sometimes difficult to diagnose anyway but seem to be more likely to be possibly delayed in the diagnostic phase. Part of the work I’ve done previously has been to talk to young people about what the diagnostic experience was like and there’s not always a delay but there’s often a process of having to go back again and again to have the symptoms taken seriously.

Bearing in mind that many of these cancers are rare and will be completely unexpected, what are your findings about how you could indeed reduce delay?

Personally I think it’s about raising awareness that it can be cancer and the awareness needs to be with young people themselves, with their parents, with health professionals in the primary care sector. But also when they approach their general practitioner that if someone has gone back two or three times with a vague symptom, perhaps a pain somewhere or more vague symptoms such as sweating or weight loss or just general concern then I think there needs to be this awareness that it could be cancer and people need to take that seriously.

But on the one hand you don’t want to scare people to death when they haven’t got anything seriously wrong with them and you also have the problem that we’re all trained not to bother the doctor with silly little things.

I think the danger is if you don’t worry about bothering people then that population can be disadvantaged because the outcomes for that group can be poorer in terms of survival.

How much difference does that make?

In terms of figures I think it’s difficult to say specifically, the work hasn’t been done in terms of at the most simple level even registering people at a specific age in every country, the system hasn’t always been there. So in terms of long-term outcomes, there is some information available and it’s becoming more readily available across the sector but it’s a fairly recent emerging concern that there’s a lack of clinical trials for this population so therefore the outcomes might be poorer as a result; there may be lack of available or age-appropriate care which could have an impact on the outcome, but it certainly would have an impact on their experience of care.

I want to ask you also about the care of these patients, but before we leave diagnosis can you help us in deciding what are the sorts of symptoms and signs to look for that could be relevant for cancer?

I think it depends very much on the cancer that we’re talking about. We can have a range of symptoms that can be as vague as just losing weight to, if you’re talking about brain tumour, you can have a range of cognitive or physical gradual changes. In the work we’ve done which is talking to young people and their families, it’s often parents themselves who notice a change and may push the young person to keep going back and keep getting those symptoms checked. But there is a message here in terms of what the oncology world needs to do to raise awareness of this group and really to question the level of education and resource that is dedicated to their needs.

When the patient is diagnosed, you have also got things to say, and you are talking about them here at the conference in Geneva, about care for that patient being a young adult or older child, young person. What are the differences for that age group?

Well it’s very interesting because in the UK we lead the way in terms of this specialist care. There are now, I believe, over seventeen specialist teenage cancer units in the UK funded by the charitable sector, it’s important to add, not government funded as such. The care there is age appropriate and that is the key message so that the facilities are appropriate to their age group, there’s an approach to care that is suitable for young people, encourages hopefully independence, encourages an idea of life beyond cancer and allows them to see that they are not alone in that situation. In the work we did in the first unit that was set up, one young person talked about being in the same boat and having been in an adult ward previously where he felt completely alien to the other people who were there, who might be very sick, and there wasn’t a sense of future and rehabilitation and recovery. So I think there’s something very important about the environment but also, perhaps more important, is the expertise that exists within those centres. Multi-disciplinary expertise, both to treat the cancer effectively but also to support young people through that process and allow them to re-integrate later back into a normal life.

So you’ve said that a lot of pioneering work and very good work is going on in Great Britain, what are the simple lessons that you would put over right now about this work that needs to be remembered?

I think it needs some evidence, I think we need stronger evidence of issues like diagnostic delay, of effective treatment. We need to look at pan-European outcomes studies; we need to look at effective models of care, effective models of follow-up and really to develop an awareness that one size doesn’t fit all when it comes to cancer care.

Thank you very much.