Adolescent and Young Adult Cancer Awareness Week

By Niamh O’Sullivan,

ADON Adolescent and Young Adult Cancer

Children’s Health Ireland (CHI) at Crumlin   

Tell us about Adolescent Cancers?

Adolescent cancers are a distinct group. They tend to represent a mix of typically paediatric and adult cancers. The most common cancer in AYA patients are leukaemia’s, lymphomas, central nervous system tumours.

They are known to be biologically different to children’s and older adult cancers. We don’t know why exactly, but AYA’s tend to have worse outcomes than children and adults. This might be because we have poor clinical trial rates for this age group, globally.  Cancer is very unlikely – only about 200 cases in those aged 16-24years every year in Ireland. Survival rates are improving but we need to focus more on finding best treatments, predicting cancer in this age group and providing tailored services in the acute setting as well as in survivorship and in palliative care.

What services are being developed?

The National Cancer Control Programme (NCCP) are planning the implementation of the National Cancer Strategy 2017-2026. The CAYA (children’s, adolescent and young adult) cancer programme in the NCCP is led by Prof. Owen Smith. A framework document will be published in May 2022. The vision is to provide Accessible, equitable and developmentally appropriate care for all AYA diagnosed with cancer across the spectrum of care resulting in better outcomes and improved quality of life. I would encourage you to keep an eye out for its release by NCCP.

What is your role and what are some of the challenges you face in this role?

My role is assistant director of nursing for AYA cancer. I work in Children’s Health Ireland @ Crumlin and in St James’s Hospital, Dublin. I am the nursing lead on the AYA team and work closely with Dr. Scheryll Alken and Prof. Owen Smith. At the moment I am involved in the strategic planning of AYA programme and mapping network development with a focus on the role of nursing within this. The biggest challenge is creating awareness and forming connections and networks that are joined in their vision to provide developmentally appropriate AYA cancer care. We are so lucky to have such talented and committed healthcare teams in Ireland and we have seen a really genuine interest in creating AYA specific approaches to care, collaboratively. I think this challenge will ultimately be the overwhelming strength of the future network.

What are some of the successes you’ve seen in this role?

There are so many developments ongoing, having a team in itself is a huge success. It has taken years of advocacy by many healthcare teams and patients and family advocates to highlight this area of cancer care. The future is definitely bright.

What are the most important things we need to know about AYA?

AYA cancer is very rare, but unfortunately it does happen!

There are many challenges that come with a cancer diagnosis in adolescence and young adulthood. Remembering the young person first, is vital to providing appropriate support.

AYA patients are strong, intelligent and have their own voice. We need to partner with AYA’s and their families to make their priorities ours too.