TEENAGERS AND YOUNG adults in Ireland are to get greater access to clinical cancer trials under a new HSE framework for patients aged 16-25.

Cancer is the leading cause of natural death in this population, with approximately 30% due to haematological malignancies such as leukaemia.

The incidence rate of some cancers such as germ cell tumours, sarcomas, Hodgkin’s lymphoma is higher in this age group than in both adults and children and the incidence rate of cancer overall is rising.

Today the HSE has launched a new framework for the care and support of adolescents and young adults with cancer in Ireland. Around 200 children are diagnosed every year with cancer up to the age of 16, with 180-190 people between 16 and 25 years diagnosed every year.

The HSE said studies over the past three decades have shown that while paediatric and older adult cancers have seen a large increase in survival rates, the same cannot be said for some specific adolescent and young adult cancers. This has become an increased area of focus in the oncology community in the recent past.

As part of the new framework targeted at adolescents and young adults, increasing access to clinical trials will be a key focus.

Speaking to The Journal, Professor Owen Smith, HSE National Clinical Lead NCCP Child, Adolescent and Young Adult Cancer said patients who participate in clinical trials do better but many trials have excluded this cohort.

“If we look at clinical trials for children, 65% of children in CHI Crumlin are entered into a trial. Across all eight cancer centres less than 5% of this age group of 16 to 25s are entered into a clinical trial. That’s a huge difference. 

“Some trials up until now have excluded them, many would only allow participants up to the age of 18 while others start at 25, so we need to start designing trials around age and not the pharmaceutical industry.”

He said Children’s Hospital Ireland has entered a relationship with the Health Research Board and secured funding to recruit participants up to the age of 25. A new clinical trial will open later this summer which will include patients in Ireland aged 1-45 years who have acute lymphoblastic leukaemia.

Professor Smith said under the new framework, four centres – at CHI, St James’ Hospital, Cork University Hospital and University Hospital Galway – will ensure greater discussion on the inclusion of patients aged 16-25 takes place during the development of clinical trials.

“This group is developing unique types of tumours and the incidence of these is increasing all the time so we need to address that,” he said.

Patients live longer on clinical trials, they also get specimens taken like biopsies and they go to research, genomics, genetics. We want to know what the drivers are for the kinds of cancers seen in this age group and also what drives toxicity in some patients [due to treatments] as not all get toxicities. We believe we’ll be able to pull them out -the bad actors – and adjust the dosage or modify treatments so we can reduce toxicities.

Professor Smith said the needs of this cohort of young people is “completely different” to adults and younger children when it comes to treatment.

“They have unique needs like fertility preservation and survivorship transition from adolescents into adults as well as their psycho-social care,” he said.

“The way we treat them is totally inappropriate, up until now a 16 or 17-year-old has been treated in an adult section sitting beside 60 to 70-year-olds and a 14 or 15-year-old is treated beside two or three-year-olds.”

He said it is important for this age cohort to have contact with their peers.

The HSE has said the new framework will see care delivered locally where possible but centralised when necessary by providing separate facilities and specialist care teams in the new Children’s Hospital and three of the eight adult designated cancer centres around the country.