Gender Neutral
Type Core
Testing Phase I / II - in development
Principal investigator(s)
Anne-Sophie Darlington
School 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.

We are awaiting final approvals to commence the next phase of our research that will involve developing and pilot testing an AYA-specific (14-39 years) module.

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. Recruitment to this extension work with young people aged 26-39 years wilis scheduled to commence by April 2019. 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. A pilot questionnaire ready for
testing is scheduled to be available by the end of 2019.

For patients

In recognition that the impact of cancer on adolescents and young adults (AYAs) is likely to be different from that of children and older adults, we designed our research to identify the best method of measuring the impact of cancer on health-related quality of life in this age group.


Sodergren SC, Husson O, Rohde G, Tomaszewska I, Vivat B, Yarom N, Griffiths H, & Darlington AS. On behalf of the EORTC Quality of Life Group. 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, Aug;7(4):453-464. doi: 10.1089/jayao.2017.0110. Epub 2018 Mar 22.

Sodergren SC, Husson O, Rohde GE, Tomaszewska I, Griffiths H, Pessing, A., Yarom N, Hooker L, Din A, & Darlington AS. On behalf of the EORTC Quality of Life Group. Does age matter? A comparison of health‐related quality of life issues of adolescents and young adults with cancer. European Journal of Cancer Care, 27 (6), e12980. Epub Nov 2018.

Sodergren SC, Husson, O, Robinson, J, Rohde GE, Tomaszewska IM, Vivat B, Dyar R, Darlington AS, EORTC Quality of Life Group. (2017). Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer Quality of Life Research, 2017, 26: 1659.