Framework for the Care and Support of Adolescent and Young Adults (CAYA) with Cancer in Ireland

Framework Document
Annual Report 2021

Children’s Health Ireland (CHI) is the ninth Cancer Centre in the Irish healthcare system, currently providing cancer services for children and adolescents up to 16 years of age as the hub of a network of cancer services. CHI warmly welcomes today’s launch by the National Cancer Control Programme (NCCP) of a framework for the Care and Support of Adolescent and Young Adults (AYA) with cancer in Ireland. This framework, which covers the period up to 2026, will focus on the specific needs and risks of AYA cancer patients. Children’s Health Ireland has planned for an increase in capacity in the new children’s hospital to meet the implementation of this Framework, specifically the change in age for admission from up to 16 years old to up to 20 years old based on best evidence on clinical outcomes.

This new framework looks to implement robust care pathways for young people with cancer in Ireland. It is arising from the National Cancer Strategy [2017-2026] where the unique and distinct needs of the AYA cancer patients in Ireland were recognised and specific recommendations were made.

Around 200 children are diagnosed every year with cancer up to the age of 16, and a further 180-190 adolescents between 16 and 25 years diagnosed every year.

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 AYA cancers. This has therefore become an increased area of focus in the oncology community in the recent past.

This framework will see a state of the art AYA cancer care network 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. The three new National AYA Cancer Units will be based at St James’s Hospital, University Hospital Galway and Cork University Hospital. These units will bring together all the relevant experts and allow this collective knowledge, experience and interest to work towards better experiences, better outcomes and better long-term quality of life.

Professor Owen Smith, National Clinical Lead for Children, Adolescent and Young Adult Cancers at National Cancer Control Programme, HSE says, “Adolescent and young adult (AYA) patients constitute a unique group that deserves special attention. Although there is marked variability between the definitions of AYAs, ranging from 15-20 to 15-39 years, cancer continues to be the leading disease-related cause of death in this population.

“AYAs with cancer are a diverse group as defined not simply by their age and distinct biology of their cancer, but in terms of the challenges they face with regards to adequate access to age-appropriate oncological care, representation on clinical trials, short and long-term health and psychosocial issues that include, fertility considerations, transition to survivorship care, psychosocial support, adherence to treatment difficulties and other dilemmas and problems exclusive to this group of patients.

“The framework succinctly outlines strategies to coordinate state-of-the-art integrated AYA care to be delivered locally when possible but centralized when necessary by providing separate facilities and specialist care teams for these patients. Once this has been achieved the challenge will then be to secure the future through education, research/innovation and future service developments. The ultimate aim of the framework is to improve the standards and quality of cancer care provided to AYAs and at the same time define outcome measures of high-quality care for AYA patients across the proposed AYA cancer network as outlined in the National Cancer Strategy.”

Minister for Health, Stephen Donnelly TD said, “Following on from the National Cancer Strategy [2017 -2026] I am delighted to launch the framework for care for Adolescent and Young Adults with cancer in Ireland. In recent years AYAs have been recognised as a unique population within the oncology community in terms of distinct biology of disease, as well as other age-related issues. Although recent studies show that child and older adult cancers have seen a large increase in survival rates, the same cannot be said for some AYA cancers.

“The Framework for the Care and Support of Adolescent and Young Adults (AYA) with cancer in Ireland is intended to be a starting point for setting the direction of AYA cancer services in Ireland. The landscape of healthcare in Ireland is changing and so must our efforts. We must continue to meet new challenges and strive to deliver on the needs of AYA patients.”

Child, Adolescent and Young Adult (CAYA) Cancer Annual Report 2021:

In addition, the HSE NCCP will publish their Child, Adolescent and Young Adult (CAYA) Cancer Annual Report for 2021 which highlights key developments over the year, work in progress and looks to the future at development opportunities.