Analysis

Children and young people with cancer: why specialist nurses are crucial for age-appropriate care

UK-wide analysis of children and young adults with cancer shows a mixed picture

UK-wide report on children, teenagers and young adults with cancer has positive news on survival rates, but there is more work to be done on certain types of the disease

  • Children, teenagers and young adults benefit from specialist care in age-appropriate settings
  • More work is needed to tackle certain types of cancer and ensure that all young people access specialist care
  • Specialist services can improve psychological outcomes, so young people can move on with their lives

For the first time, data on cancer in children, teenagers and

...

UK-wide report on children, teenagers and young adults with cancer has positive news on survival rates, but there is more work to be done on certain types of the disease

  • Children, teenagers and young adults benefit from specialist care in age-appropriate settings
  • More work is needed to tackle certain types of cancer and ensure that all young people access specialist care
  • Specialist services can improve psychological outcomes, so young people can move on with their lives
The teenage and young adult team at the Christie Hospital in Manchester support young people with cancer from diagnosis until up to two years after treatment
The teenage and young adult team at the Christie Hospital in Manchester support young people with cancer from diagnosis until up to two years after treatment Picture: Christie

For the first time, data on cancer in children, teenagers and young adults has been brought together in a UK-wide report.

While the report paints a positive picture of increased survival rates, it suggests more work is needed to tackle certain types of cancer and ensure that all young people access specialist care. The Children, Teenagers and Young Adults UK Cancer Statistics Report 2021, published by Public Health England, brings together data from the UK’s four national cancer registries.

Ben Sundell, Teenage Cancer Trust head of policy
Ben Sundell

Teenage Cancer Trust head of policy Ben Sundell says it is the first time in nearly a decade that there has been any sort of UK-wide analysis of incidence, survival or mortality. ‘And the first time it has been done for children, teenagers and young adults’.

Cancer is most common cause of childhood death outside infancy

Mr Sundell would ideally like to see this kind of data published annually. ‘That would help us understand the issues and where intervention should be targeted.’

While cancer is rare among children and young people it is still the most common cause of childhood death outside infancy and the most common disease-related cause of death in teenagers and young adults.

‘It can often feel like young people with cancer are forgotten in overall conversations about cancer,’ says Mr Sundell. ‘While they’re a small proportion of the overall number who get cancer, it’s still significant for that age group.’

The data shows that children and young people get different types of cancer to adults. Survival rates exceed 90% for some types of cancer, including Hodgkin’s lymphoma, retinoblastoma, germ cell tumours and skin and thyroid cancers. However, the data shows there are several cancers with poorer survival rates, including some types of brain cancer, bone tumours and soft tissue sarcomas. Overall, survival rates increased over the two decades covered by the report.

Services tailored to the needs of young cancer patients

The overall five-year survival rate for children under 15 increased from 77% for those diagnosed in 1997-2001 to 84% for those diagnosed in 2012-16.

Meanwhile, five-year survival among those aged 15-24 increased from 79% to 87%. This has gone hand in hand with efforts to create services tailored to the needs of young cancer patients.

Leeds Teaching Hospitals NHS Trust Teenage Cancer Trust nurse consultant Sue Morgan says a key message is that children, teenagers and young adults require specialist care in age-appropriate settings.

Cancer treatment at a specialist service proved to be a positive experience

Nicole Lowther was diagnosed with Hodgkin’s lymphoma at the age of 17 during her Scottish higher exams
Nicole Lowther

Nicole Lowther, pictured, was diagnosed with Hodgkin’s lymphoma at the age of 17 during her Scottish higher exams. ‘The first thing I asked was if I was going to lose my hair,’ she recalls.

She was referred to The Beatson West of Scotland Cancer Centre, where she underwent further tests and started treatment at the Teenage Cancer Trust unit. She went on to have six months of ABVD chemotherapy with one treatment every two weeks, mostly as an outpatient.

Despite feeling ill she found it a ‘very positive experience’, and being treated at a specialist service for young people made a big difference. ‘I don’t know how it would have gone if I hadn’t had that support network of people the same age to relate to,’ she says.

Seeing the same nurses each time for chemo and blood tests also helped. ‘Just being that friendly face and listening ear is very important,’ she says.

As a member of NHS Scotland’s Managed Service Network for Children and Young People with Cancer’s youth advisory forum, she is aware that not all young people with cancer are as fortunate.

‘If you’re treated at a facility that doesn’t have a specialist ward or specialist nurses you could feel very alone or alienated because you’re so much younger.’

Her cancer went into remission soon after treatment but she continues to have regular check-ups at The Beatson and has been able to access all the support she needed during and after treatment with help from her nurse or oncologist.

‘The only thing I would change is getting diagnosed earlier,’ she says. ‘I was ill for months, if not years, beforehand and it was a constant battle with my GP to get a referral to the hospital. This is a common story, because health professionals aren’t given enough training to spot signs of adolescent cancer.’

Ms Lowther, now 20, is studying for a degree in psychology at the University of Stirling and would love to work with young people affected by cancer. ‘If I could help people with their mental health before, during and after treatment, that would be amazing.’

Not all are accessing specialist services or even aware they are available

‘They are among their peers, which helps a lot. They get that support and that feeling they are not alone.’

Crucially, specialist units also bring together nurses and other staff with skills and experience in looking after young people, with the medical expertise needed to treat cancers in this age group, she says.

‘Nurses tend to have that longer-term relationship and are well-placed to manage that survivorship journey’

Louise Soanes, chief nurse at the Teenage Cancer Trust chief

However, not all young people – especially young adults – are accessing specialist services or are even aware they are available, says Ms Morgan, who believes nurses have a key role to play in ensuring referrals are made.

In June 2019, NHS England unveiled proposed changes to cancer services for children and young people designed to simplify care pathways and plug some of the gaps.

A large-scale research programme – the Brightlight study – involving clinicians, researchers and cancer units across England is also investigating the value of specialist services for teenagers and young adults.

‘What we’re hoping to prove – and what we certainly see on the ground – is we’re improving the psychological outcomes of having cancer,’ says Ms Morgan. ‘A key aim is that young people thrive and move on with their lives.’

Louise Soanes, Teenage Cancer Trust chief nurse
Louise Soanes

Nurses are often best-placed to support young cancer survivors

Teenage Cancer Trust chief nurse Louise Soanes says there is more emphasis than ever on support for young cancer survivors and nurses are often best-placed to oversee that. ‘Nurses tend to have that longer-term relationship and are well-placed to manage that survivorship journey,’ she says.

Nurses are increasingly leading clinics and specialising in elements of cancer care, including late effects – which help people manage health problems stemming from cancer or its treatment – fertility preservation, end of life and palliative care.

They also play a crucial role in supporting young patients’ parents, carers and siblings, adds Dr Soanes.

The advent of COVID-19, which has disrupted cancer care, makes it all the more important to ensure that young people with cancer access services including mental health support.

COVID-19 restrictions have felt like a double whammy to some young cancer survivors

A Teenage Cancer Trust survey of 118 young people with cancer in May 2020 discovered that more than half had found it hard to access psychological support.

Dr Soanes says that for many young survivors looking forward to getting back to school, work or socialising, the restrictions imposed by the pandemic have felt like a double whammy.

Proton Beam therapy centre at The Christie Hospital in Manchester
Proton Beam therapy centre at The Christie Hospital in Manchester Picture: Christie

Advances over the past 20 years include increased personalisation of treatment and the use of highly specialist treatments such as CAR-T cell and proton beam therapies. There has also been an increased focus on providing day care or treatments at home, with the aim of reducing hospital stays and disruption to young lives.

Data highlights differences in survival rates for some types of cancer

Nurse Kate Law, a research fellow at the University of Manchester and The Christie NHS Foundation Trust, is researching the needs of young brain tumour survivors with the aim of developing an assessment tool for use in late effects’ clinics.

She says: ‘The needs of survivors can vary greatly between the type of cancer somebody has had and the age at which they were diagnosed.’

Ms Law adds that the new data is incredibly useful for nurse researchers like herself and helps pinpoint areas where further work is needed. ‘Where we haven’t seen that increase in survival in cancers like medulloblastoma and Ewing sarcoma in children identifies further areas of research.

Nurse Kate Law, a research fellow at the University of Manchester and The Christie NHS Foundation Trust
Kate Law

‘The increase in preventable cancers like cervical cancer and melanoma in teenagers and young adults says to me we need to be looking at age-appropriate prevention strategies.’

The data also highlights differences in survival rates for some types of cancer between children and teenagers and young adults. For example, teenagers and young adults continue to have worse survival rates than children for osteosarcoma, Ewing sarcoma and rhabdomyosarcoma, with no recent improvements.

Survival rates are also worse among teenagers and young adults for acute lymphoid and myeloid leukaemia and non-Hodgkin lymphomas, although the gap has reduced.

This too needs further investigation, says Ms Law, and nurses have a vital role – from collecting routine data that makes research possible to devising major studies and working on clinical trials.

Nurses are in an ideal position to lead the way in skin cancer research

The data shows that skin cancer is now the third most common type of cancer in young people aged 15-24.

Open University senior lecturer in children and young people’s nursing Wendy McInally says: ‘That’s a big jump.’

Dr McInally’s PhD explored the experiences of adolescents, young adults and their families living with malignant melanoma. Her study found families struggled to get support and identified a lack of knowledge and awareness of this type of cancer in young patients.

While skin cancer may be seen as a type of cancer that is preventable, she said her study suggested a more complex picture, with most families reporting children had not been overexposed to the sun.

‘We know ultraviolet radiation can damage the skin but we also know there can be genetic dispositions. The young people I interviewed said they – and their mothers and fathers – did not expose themselves to the sun or go on sunbeds, which is interesting.’ She said more research was needed and nurses are in an ideal position to lead the way.

Need for more specialist services for children and young people in remote and rural areas

One key area for improvement is participation in clinical trials, which are generally associated with better outcomes. But participation rates are lower among teenagers and young adults with cancer, compared with children and older adults.

Wendy McInally, Open University senior lecturer in children and young people’s nursing
Wendy McInally

The NHS Long Term Plan for England includes a commitment to ensure that participation among children remains high and increases by 50% among teenagers and young adults by 2025.

Dr McInally would like to see more work to increase the reach of specialist services to children and young people living in remote and rural areas and improve the transition between children’s and adult services.

She chairs the European Oncology Nursing Society education working group and highlights a need for more specialist training for nurses working in the field as well as increased awareness among all nurses of the specific needs of children and young people with cancer.

The teenage and young adult team at The Christie Hospital in Manchester includes five nurses and four Teenage Cancer Trust youth support coordinators
The teenage and young adult team at The Christie Hospital in Manchester includes five nurses and four Teenage Cancer Trust youth support coordinators Picture: The Christie

The pandemic has shown teams caring for children and young people with cancer they can work more flexibly, with increased use of technology – something Dr McInally believes nurses must learn to embrace. She is looking at ways to incorporate digital literacy into the Open University’s nursing children and young people programme.

Note of caution on the overuse of technology

Ms Morgan says nurses have long used technology such as text messaging to communicate with young cancer patients. She believes innovations such as virtual appointments will have a role, but sounds a note of caution.

‘We need to be careful we don’t replace everything with technology. We have closed lots of gaps and we don’t want to start making more.’

Overall, she describes the new data on cancer in children, teenagers and young adults as ‘very encouraging’. But she urges nurses not to be complacent. ‘There is still an awful lot of work to do.’



Find out more

Want to read more?

Subscribe for unlimited access

Enjoy 1 month's access for £1 and get:

  • Full access to cancernursingpractice.com
  • Bi-monthly digital edition
  • RCNi Portfolio and interactive CPD quizzes
  • RCNi Learning with 200+ evidence-based modules
  • 10 articles a month from any other RCNi journal

This article is not available as part of an institutional subscription. Why is this?

Jobs