Developing Psycho-Oncology Services for CAYA with cancer in Ireland: A blueprint for the next decade

Today (Wednesday, 17th May 2023), the HSE’s National Cancer Control Programme (NCCP) and Children's Health Ireland (CHI) at Crumlin are delighted to launch the Model of Care for Psycho-Oncology services for patients aged 0-24 years and their families.

The primary aim of the Model of Care is to provide a blueprint for the provision of psychosocial and psychological support services for children, adolescents and young adults (CAYA) with cancer over the lifetime of the current National Cancer Strategy (2017-2026) and beyond

Over the past decade in Ireland, there has been increasing recognition of the psychological impact of a cancer diagnosis not just on the patient, but on the entire family and the wider community. This is especially true when the diagnosis occurs in children, adolescents and young adults. Each year in Ireland, around 200 children up to the age of 16, a further 69 adolescents between the ages of 16 and 19, and 111 young adults between the ages of 20 and 24 are diagnosed with cancer.

Psycho-Oncology services for all 0-15 year olds will be delivered within the National Paediatric Psycho-Oncology (NPPO) service in CHI at Crumlin, while AYA Psycho-Oncology services (for 16-24 year olds) will be delivered within the recently developed AYA Cancer Service Network, which incorporates CHI at Crumlin, Cork University Hospital, Galway University Hospital, and St James’s Hospital.

Launching the new Model of Care, Minister for Health, Stephen Donnelly, TD, said: “The development of the Model of Care relies on several policies and initiatives over the past number of years including the National Cancer Strategy, the International Standards for paediatric psychosocial care, the Sláintecare report and the Framework for the care and support of adolescents and young adults.

“It represents a major step forward in both identifying the significant challenges faced by these patients and their families, as well as highlighting the main issues that will need to be addressed to provide an integrated holistic and professional service to those affected by a cancer diagnosis.”

Welcoming the publication of the Model of Care, Prof. Risteárd Ó Laoide, National Director of the National Cancer Control Programme (NCCP), said: “The National Cancer Strategy highlighted the important role of Psycho-Oncology services for people living with cancer and their families. This Model of Care is an important step in highlighting the supports needed for children, adolescents and young adults with cancer and their families. I want to thank the broad range of stakeholders who were involved in developing the Model of Care.”

Eilísh Hardiman, Chief Executive, Children’s Health Ireland, said: “I welcome the launch of the CAYA Psycho-Oncology National Model of Care. This is an important milestone for the National Paediatric Psycho-Oncology Service within the National Children's Cancer Service, Children’s Health Ireland in our commitment to developing services that encompass the holistic needs of the young person. I’m also pleased for the inclusive engagement on this model of care as it reflects our networked approach to paediatric services in collaboration with other cancer centres.”

Dr Helen Greally, National Clinical Programme Lead for Psycho-Oncology, HSE NCCP, stated: “Publishing this Model of Care is a particularly important milestone in that it outlines key aspects of psychosocial and psychological support necessary, so that the diagnosis of cancer in this age group can be managed in a way that ensures the best quality of life possible for the patient and the family.”

Dr Chiara Besani, Psycho-Oncology Clinical Lead of the National Paediatric Psycho-Oncology Service, CHI at Crumlin and co-Chair of the CAYA Psycho-Oncology Model of Care, outlined: “The launch brings to fruition the work that has been developing in paediatric Psycho-Oncology over the past decade by hospitals and charities. While cancer is recognised as a potentially traumatic life event for CAYA, we aim to minimise the psychological, neurocognitive and psycho-social aspects of a cancer diagnosis and contribute to improved long-term quality-of-life for our patients.

“Crucial is the recognition that every child, adolescent and young adult in Ireland should receive CAYA-centric, developmentally appropriate, and systemic care. We are looking forward, with appropriate resources, to be able to provide equal access to the best evidence-based care.”

Launch of the National Paediatric Psycho-Oncology (NPPO) Service

Also announced at today’s event in Farmleigh the launch of the NPPO Service within the National Children’s Cancer Service (NCCS), CHI at Crumlin. Over the past decade a motivated group of professionals, led by Dr Chiara Besani and Professor Owen Smith and supported by Dr Helen Greally, has come together to redefine Psycho-Oncology care in the NCCS. The aim of NPPO is to be able to provide every child and adolescent going through a cancer journey with equity of access to the best Psycho-Oncology practice based on international best practice, and in line with the recommendations of the National Cancer Strategy. Significant funding is needed to achieve this aim.

Speaking today, Dr Besani explained: “Being diagnosed with cancer as a child or adolescent can be a potentially traumatic experience. Our role is to ensure that we support each family in coping and adjusting to the incredibly unfair and difficult journey they face. In clinical practice, we are delighted to see many CAYA developing “post-traumatic growth” and we aim for all of our patients to achieve their goals.

“There are exciting steps in our future as a service in terms of joining our first medical clinical trials, developing the AYA aspect of our service and working closely with our medical and nursing colleagues and the NCCP to develop a survivorship service.”

Professor Owen Smith, National Clinical Programme Lead for CAYA with cancer at the NCCP and Professor in CAYA Oncology at Trinity College Dublin stated: “It has been an absolute pleasure working with Dr Besani and her team over the past decade to develop the National Paediatric Psycho-Oncology service in the NCCS. I am pleased to say it is because of their efforts we are now in a much better position to deliver comprehensive cancer care to children and adolescents with cancer in Ireland. I also want to thank Drs Besani and Greally for their work in developing the CAYA Psycho-Oncology MOC. This landmark document will guide the development of CAYA Psycho-Oncology care in Ireland, for many years to come”.

Last updated on: 17 / 05 / 2023