Gender Neutral
Type Core
Testing Phase I / II - in development
Principal investigator(s)
Anne-Sophie Darlington
Faculty of Health Sciences, University of Southampton
Southampton, United Kingdom
Study coordinator(s)
Samantha Sodergren
Faculty of Health Sciences, University of Southampton
Southampton, United Kingdom
, Amy Din
Faculty of Health Sciences, University of Southampton
Southampton, United Kingdom

Project summary

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 [1-5]. 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 [6]. 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 [7,8]. 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 [9,10].
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 have completed our initial Phase 1 work with AYAs aged 14-25 years. This research involved interviews with AYAs and health care professionals as well as a comparison with older adults with cancer. From this, we captured 77 HRQoL concerns from AYAs and identified a number of unique social and emotional issues which were not so relevant to older adults. As part of our initial research we also asked AYAs to comment on the EORTC QLQ-C30 which was originally designed for older adults with cancer and found that it was, on the whole, acceptable to AYAs and that, with the addition of some AYA specific questions, would provide a comprehensive picture of their cancer experience. Our initial results thus supported the need for an AYA specific module as well as further work into the use of the EORTC QLQ-C30 with AYAs. Following on from this phase of work, we have extended the age definition of AYAs to include 14-39 year olds, thus aligning our work more closely to that of our international peers.

Future plans

The next phase of our research will involve additional interviews with young people aged 26-39 year olds to check whether there are any additions to the list of concerns we generated following our work with 14-25 year olds. We will then carry out Phase 2 and 3 work using the EORTC Quality of Life Group item library to select items and pilot testing the measure.

For patients

Adolescents and young adults (AYAs) with cancer are likely to have different experiences to children and older adults with cancer. We designed our research to find the best way to assess how these different experiences impact AYAs’ quality of life.


Sodergren SC, Husson O, Rohde G, Tomasewska I, Vivat B, Yarom N, Griffiths H, & Darlington AS. A Life Put on Pause: An Exploration of the Health-Related Quality of Life Issues Relevant to Adolescents and Young Adults with Cancer. Journal of Adolescent and Young Adult Oncology, in press.