Southampton researchers lead international project to create quality-of-life tool to support young people with cancer

A project led by Professor Anne-Sophie Darlington and Dr Samantha Sodergren from Health Sciences has created the world’s first comprehensive tool to assess quality-of-life for adolescents and young adults with cancer.

The tool, in the form of a questionnaire, covers key themes identified by young people with cancer – ranging from the impact of cancer on their daily activities and relationships, to self-esteem and appearance, and changes to their motivation and priorities.

The questionnaire was developed in partnership with 365 adolescents and young adults from across the world who were receiving or had completed treatment for cancer, as well as health and care practitioners who support young people with cancer.

The findings of the project are published today in JAMA Network Open .

Dr Samantha Sodergren , Senior Research Fellow at the University of Southampton, said: "This is the world's first quality-of-life survey for adolescents and young adults with cancer. It aims to measure what matters most to them to help support them during and after their treatment and understand what they need.

She added: "For young people with cancer, the challenges are compounded because of their age and what is happening mentally, physically and emotionally at that time.

"Cancer creates an interruption to the life that they were expecting to have at that age – things like education are put on hold and it can also be disruptive to other elements of their life like their identity and relationships."

The work has been funded by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group and was produced in collaboration with universities and medical institutions across the world.

Following a systematic review of existing literature to create an exhaustive list of quality-of-life issues, young people aged 14-39 years with cancer were asked how their lives had changed since diagnosis and which of these issues affected them most.

The most common issues included the impact of symptoms such as pain, nausea, and vomiting; restrictions to activities like education and hobbies; disrupted life plans, social life and loss of friends; emotional issues like depression, anxiety and body image; and fertility and financial concerns.

There were also some more positive impacts noted, including greater maturity and a different outlook on life, with altered priorities and an increased motivation to achieve and live life to the full.

Based on this feedback, a draft questionnaire was created and translated into 17 languages and pilot-tested with young people with cancer from 19 countries to inform the final version which includes 30 questions.

The questionnaire (EORTC QLQ-C30) has now been approved for use by the EORTC Quality of Life Group (QLG) and can be accessed via their website .

Professor Anne-Sophie Darlington , Professor of Child and Family Psychological Health, said: "Having a questionnaire for adolescents and young adults with cancer is so important because it shines a light on their very specific experiences.

"The questionnaire can be used in clinical trials for better treatment, for research to explore their quality of life during treatment, but also in clinical practice to make sure doctors and nurses focus on the right aspects of their life during consultations.

"Beyond this, the questionnaire gives adolescents and young adults a voice. As a young person said: "Seeing these questions in front of me makes me realise I am not alone in my experience.'"

The questionnaire can be found on the EORTC website