Adolescents and Young Adults

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 have started recruiting young people aged 14-39 years with cancer to test the questionnaire and provide their feedback.

Adolescents and Young Adults

Questionnaire

We started pilot testing the questionnaire in 2020 and hope to finish recruitment to this Phase of work by the end of 2023. We will then be in a position to start a larger international validation study. We are always happy to welcome new collaborators; if you are interested in becoming a collaborator, please contact Samantha Sodergren for more information: S.C.Sodergren@soton.ac.uk

QLQ-C30 Validation

In addition to developing and testing a new measure for AYAs with cancer, we are currently carrying out a project to validate the EORTC QLQ-C30 with young people with cancer aged 12-17 years.

We will be recruiting young people who have been diagnosed with cancer and receiving treatment for curative intent or who are receiving palliative care. This study addresses whether the EORTC QLQ-C30 is acceptable, and if the content is relevant and representative for this age group. Young people and their parents’ questionnaire responses will also be compared.

For more information about this study or to register your interest in collaboration, please get in touch S.C.Sodergren@soton.ac.uk

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.

For further information please contact Samantha Sodergren: S.C.Sodergren@soton.ac.uk

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.