Adolescents and Young Adults with Cancer

For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. There are several issues that warrant the classification of AYAs as different from paediatrics or older adults with cancer. Firstly the epidemiology of cancer in AYAs differs from other age groups. While cancer in AYAs is relatively rare, its incidence is increasing and is higher than that in children. In the UK, 2000 AYAs (aged between 15 and 24 years) are diagnosed with cancer each year which is the second cause of death in this age group. Cancer types in this group are less prevalent in other age groups and there is evidence to suggest that survival outcomes for some cancers in this group have not improved in line with figures achieved for paediatric or older adult groups. Ten per cent of tumours seen in AYAs are predominantly childhood tumours, while 30% of tumours have a peak in adolescence and include Hodgkin lymphoma, Ewing’s Sarcoma, osteosarcoma, germ-cell tumours and rare soft-tissue sarcomas. A final 60% are early-onset adult cancers.

It follows that measures developed for adults or children with cancer might not be suitable for AYAs. The current study is designed to capture the health related quality of life (HRQoL) issues relevant and important to AYAs with cancer. This study will also provide an evaluation of the suitability of the EORTC QLQ-C30 for use with AYAs with cancer and from this will offer recommendations to the EORTC Quality of Life group (QLG) on a suitable HRQoL assessment approach for this age group.

EORTC QLQ-AYA30

We have completed the pilot testing of the EORTC measure for Adolescents and Young Adults (Phase 3). The EORTC QLQ-AYA30 is now EORTC approved and available for use (see the link below for application to the EORTC QLG). Our manuscript detailing Phases 1-3 was published in JAMA Open Network in December 2025 (doi: 10.1001/jamanetworkopen.2025.49071. PMID: 41632126; PMCID: PMC12717613). The next Phase of our work (Phase 4): An International Field Study to test the Reliability and Validity of the EORTC-AYA30 is currently being set-up with all ethical approvals anticipated to be in place by July 2026. The questionnaire has currently been translated from English into 17 different languages with additional translations planned.

Current status:

Phase IV set-up. The protocol and case report form are currently under review  by all collaborators.

Recruitment to start September – October 2026 (once all approvals have been granted).

End of study scheduled for March 2029.

Phase IV report / publication to be submitted for EORTC QLG approval September 2029.

To improve our understanding of how cancer affects adolescents and young adults (AYAS: 14-39 years), we need a measure of quality of life. We have developed and tested a questionnaire for AYAs and asked them to tell us if we are asking the right questions in the right way. We now have a questionnaire with 30 questions asking about limitations taking part in activities, worries about cancer and the future, how young people with cancer feel about themselves, relationships with others as well as positive changes experienced following a diagnosis of cancer. This questionnaire will now be tested with a larger group of young people with cancer from across the world.