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.

We completed the pilot testing of the AYA questionnaire in January 2024 with a total sample size of 253 AYAs.

Recruitment to the EORTC QLQ-C30 validation study ended in June 2024 with the target recruitment of 200 children reached.

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 available for use (see the link below for application to the EORTC QLG). Our manuscript detailing Phases 1-3 is currently under review for publication. The next Phase of our work (Phase 4): An International Field Study to test the Reliability and Validity of the EORTC Adolescent and Young Adult Module (the EORTC QLQ-AYA30) for assessing Health Related Quality of Life of Adolescents and Young Adults with Cancer has been approved for funding (pending revisions which are under review). We anticipate commencing Phase 4 testing of the EORTC QLQ-AYA30 early 2026.

QLQ-C30 Validation

We have collected data from 200 adolescents (12-17 years) and 144 “significant others” to test the acceptability and psychometric properties of the EORTC QLQ-C30 with adolescents. We anticipate publishing our results before the end of 2025

Young Survivors of Cancer

We have just launched a new study investigating the quality of life concerns of young survivors of cancer. This study will map item sets for child, adolescent, and young adult cancer survivors. We welcome new collaborators.

For further information please contact Samantha Sodergren: S.C.Sodergren@soton.ac.uk or Kirsty Way: K.M.Way@asoton.ac.uk

We recognize that the impact of cancer on adolescents and young adults (AYAs) is likely to be different from that of children and older adults. We have asked AYAs with different cancers from different countries to tell us how cancer and its treatment have affected them. We used these experiences to develop the World’s first questionnaire to measure quality of life of AYAs aged between 14 and 39 years. AYAs with cancer have also helped us to review the questions included in the question to ensure that we measure what matters to them.