17th February 2023
“Around 200 children up to the age of 16, and a further 180 adolescents between the ages of 16 and 25 years, are diagnosed with cancer in Ireland every year,” according to Prof Owen Smith, National Clinical Lead for Children, Adolescent and Young Adult Cancers (CAYA) at the HSE National Cancer Control Programme (NCCP). Providing an overview of the achievements of the past year, Prof Smith explained that their work “centred around improving the care and treatment for these children, with a particular focus on adolescents and young adults with cancer.
“While child 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. We recruited additional CAYA staff in 2022, the majority of whom are working directly in delivering services to children, adolescents and young adults with cancer.”
Prof Risteárd Ó Laoide, National Director, NCCP, noted that the recently launched Annual Report “outlines the progress and achievements in the area of Adolescent and Young Adult cancer care. I would like to express my gratitude to the multidisciplinary cancer teams, cancer charities, and AYA cancer patients and their families who have worked tirelessly to develop optimum cancer care for patients.”
Among the developments last year was the establishment of ‘The Hangout,’ a six-month pilot programme designed to create a non-clinical environment for Adolescent and Young Adult cancer patients in St James’s Hospital, Dublin. The first multidisciplinary Adolescent and Young Adult Cancer Education Day was held on November 21st last year at St. James’s Hospital in conjunction with the Irish Cancer Society and the NCCP.
A Young Persons Advisory Group (YPAG) was also established at National Children’s Cancer Service. In their contribution to the Annual Report, YPAG representatives noted that they believed that “children and young people with cancer should have a voice and share their opinions. They should be actively involved in the design and delivery of clinical research and services, to make sure all are relevant and suited to their needs.”
They continued: “We are a group of interested young people who have or had cancer. We meet a number of times a year to give our views and advice on new research or service developments. We also get a chance to learn about research, medicine
, and science while having fun. The group was founded in 2022 and we used our first meeting to get to know each other with some team games and then figured out how our group could work best.
“At our second meeting we heard from three researchers and discussed several important issues, including the presentation of support information for young people with cancer (from the Irish Cancer Society), biobanking and consent (from Systems Biology Ireland) and how to structure a research focus group for young people with lymphoma after radiotherapy (from Trinity College Dublin). Our feedback so far has been resoundingly positive. We also shared the work of our YPAG in May 2022 as part of the DCU Seminar Series entitled PPI (Public and Patient Involvement) in Research with Children and Young People.”
The group is looking forward to further expansion in 2023, including ongoing engagement with the research and healthcare community to ensure all interested and relevant parties can engage with and learn from the group and its members.
In 2022, the NCCP also welcomed the inclusion of childhood, adolescent and young adult cancer in the ‘significant ongoing illness’ criteria of DARE (Disability Access Route to Education). DARE is an alternative admissions route to third level for students whose disability or ongoing illness has had a negative impact on their second-level education.
A Model of Care for Psycho-Oncology Services for Children, Adolescents and Young Adults with cancer and their families is currently being developed, and is expected to be completed later this year.
A key focus in 2022 was publishing and implementing the recommendations set out in the Framework for the Care and Support of Adolescent and Young Adults (AYA) with Cancer in Ireland.
According to Fiona Bonas, Assistant National Director, NCCP, “significant progress has been made in implementing the Framework which now sees a network of three new AYA designated units in place at St. James’s Hospital, Dublin, Cork University Hospital and Galway University Hospital linking to a central hub at Children’s Health Ireland.“
Read the NCCP Children, Adolescent and Young Adult Cancers (CAYA) Annual Report 2022 (PDF, 4.4MB, 48 pages)