Research: Training needs of clinicians to improve end-of-life care for adolescents and young adults with cancer

In collaboration with the University of Southampton  and the Global Accord (Teenage Cancer Trust, CanTeen & Teen Cancer America) Teenage Cancer Trust are involved in a programme of work looking at end-of-life communication with young (12-39yo) people with cancer.

The overall aim of the work is to compare best-practice 'standards of care' to inform how training and support resources can be designed for health professionals working with young people in end of life care. This is the UK arm of the survey, recruitment has taken place in Australia and New Zealand.

The study involves health professionals completing an online survey which should take 20 minutes to complete, more information on the study, who to contact if you have questions and the link to the study is in the letter below:

You are invited to take part in a survey being run by A/Prof Anne-Sophie Darlington and her team at the University of Southampton investigating how end-of-life (EoL) care and communication for teenagers and young adults (TYAs) with cancer is delivered by clinicians working with AYAs, and to obtain professional consensus around what their needs/preferences are for training in EoL communication with TYAs with cancer. This study is carried out in the UK, but is part of a larger international study, and will allow us, in part, to look at similarities and differences between countries. The study team is looking for multi-disciplinary healthcare professionals who have treated at least one patient between the ages of 12-39 years who has died from cancer.

The questionnaire is entirely online. It should take approximately 20 minutes to complete.

You will be asked questions about your demographic characteristics (e.g., your age, sex); aspects of your work setting (e.g., hospital setting, patient numbers per year); and your thoughts regarding barriers to delivering high-quality end of life care (including end-of-life communication) for TYAs, and what type of EoL communication training is most needed and preferred. Please note, the survey is does not ask for any identifying information, so no responses regarding your clinical practice will be linked to you personally.

If you are interested in participating please follow the link below to the full information statement and online survey.

If you would like any further information about the study please contact Anne-Sophie Darlington at

If you have further questions about your rights or if you wish to lodge a complaint or concern, you may contact the RIG Manager, University of Southampton, Southampton, SO17 1BJ, Phone: 02380 595058, Email:, and quote 52885.