Specifically, we are looking to write a position paper on minimum standards of care for AYAs across Europe, and create a Core Outcome Set which identifies the most important outcomes to assess for AYAs with cancer, from the point of view of AYAs, their caregivers, healthcare professionals, researchers and policy makers. The overall aim to improve care for AYAs with cancer.
What is this study about?
Adolescents and young adults (AYAs) with cancer require access to oncology services that provide expert cancer care and consider their unique age-specific and complex psychosocial and physical needs.
What does taking part involve?
To develop our recommendations and a Core Outcome Set (COS), we need to arrive at a consensus, which considers opinions from AYAs, their caregivers, healthcare professionals, researchers and policy makers.
We will ask you to complete up to 3 online surveys.
In each survey round, you will be given a list of services and outcomes relevant to AYA cancer care and asked to rank them based on your perceived level of importance.
Each survey should take between 15-20 minutes to complete. There will be approximately 3-4 weeks between each survey.
Who are we looking to recruit?
You are eligible to take part in this study if you meet any of the following criteria:
- You received a cancer diagnosis between the ages of 15 and 39.
- You are a parent / partner / caregiver / representative to an individual who received a cancer diagnosis between the ages of 15 and 39.
- You are a healthcare professional (working with AYAs with cancer)
- You are a researcher (in the field of AYA cancer)
- You are a policymaker (relevant expertise to AYA cancer)
How do I get involved?
The first survey will go out in September 2023. We are currently raising awareness and gathering interest of this study. If you are interested in participating, or would like some further information, please contact the researcher, Kirsty Way – k.way@soton.ac.uk