Young Survivors of Cancer: Phase I study to determine the item sets for child, adolescent and young adult cancer survivors

Background: The number of people diagnosed and successfully treated with cancer during childhood, adolescence and young adulthood is growing worldwide. Welcome improvements in survivorship for young people demand an improved understanding of the health-related quality of life (HRQoL) of these people who will potentially be living with the legacy of cancer for a significant portion of their lives. One particular aspect that warrants more attention is the impact of the young person’s stage of development at the time of their diagnosis and treatment on HRQoL.

Objectives: This study aims to identify the HRQoL issues of relevance and importance to young survivors of cancer with a focus on the impact of time of diagnosis and treatment and current life stage. The study aims to develop item sets for child cancer survivors (CCS) (diagnosed up to the age of 13 years) and adolescent and young adult survivors (AYACS) (diagnosed between 14-39 years).

Methods: A list of HRQoL issues for CCS and AYACS will be generated following a literature review. Up to 55 health care professionals (HCPs) with at least 12 months experience of caring for CCS and AYACS will be asked about the HRQoL issues they believe should be included in an item set or questionnaire for young survivors of cancer. CCS and AYACS (40 in each group) will also be invited to participate in interviews if they have been diagnosed with any cancer under the age of 39 years and who, at the time of study enrolment, are at least 1 year post active treatment with curative intent (except for maintenance treatments) and no older than 49 years old. Following the initial issue generation phase, an item mapping exercise will be conducted by members of the research team to identify issue sets for CCS and AYACS which will then be shown to a separate group of 10 HCPs and 80 young survivors (40 CCS and 40 AYACS) for review.

Outcomes: The overall outcome of the project will be to establish a strategy to measure HRQoL in survivors of cancer diagnosed during childhood, adolescence, and early adulthood.

• The study has received full ethics for UK sites and data collection has begun in 3 UK sites
• Site set up is underway for international sites and data collection has begun in 4 international sites
• An umbrella review of existing systematic reviews has been published, exploring health-related quality of life issues experienced by young people who were treated for cancer as a child or adolescent and young adults
• Recruitment is underway for both patients and healthcare professionals. Several sites are in set up and we are still accepting new collaborators
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We are hoping to complete recruitment by September 2026. The information received from our literature review, as well as interviews with patients and healthcare professionals, will inform our mapping exercise, where we can then better understand the health related-quality of life concerns of young people living beyond cancer.

We are still looking for new collaborators for this project. If you are interested in collaborating or would like more information, please contact the study coordinator, Kirsty Way (k.m.way@soton.ac.uk).  

It is recognized that having a diagnosis of cancer as a child, adolescent or young adult can affect young people’s lives long after treatment has finished. We are asking young people to talk about the different ways in which cancer and its treatment has affected them so we can improve our understanding of what life is like for them, living beyond their disease, and to help us measure their quality of life.