Patients from Cheshire and Merseyside are being asked to take part in a research study designed to improve to improve autistic adults’ experience of cancer care.
Funded by North West Cancer Research, the project is led by Dr Gemma Cherry and Dr Jennifer Kirton from the Department of Primary Care and Mental Health, in partnership with The Clatterbridge Cancer Centre NHS Foundation Trust (CCC)’s Dr Lynda Appleton.
Current research shows that while autistic people are diagnosed with cancer at similar rates to the wider population, they face twice the risk of dying of the disease, often due to preventable differences in care. Communication barriers, sensory sensitivities, and a lack of specialist support staff with knowledge of autism, contribute to these poorer outcomes.
The new study, titled ‘Understanding the Needs of Autistic Adults with Cancer During Active Cancer Treatment’, will investigate these differences, and see how they can be reduced.
“This is a much-needed step toward understanding why autistic people experience such unequal outcomes in cancer care,” said Dr Cherry, Principal Investigator and Senior Lecturer in Clinical Psychology. “We’re aiming to listen directly to autistic adults and their families to build a clearer picture of the barriers they face and how services can change.”
“We’re taking a participatory, co-produced approach,” added Dr Kirton, Postdoctoral Research Associate. “This isn’t just about documenting problems – it’s about working with autistic people to co-create solutions that clinicians can actually use to make care more accessible, respectful, and effective.”
The study aims to produce clinically relevant, co-designed resources to help healthcare professionals better support autistic patients and so reduce health inequalities and improve outcomes.
Dr Lynda Appleton, Senior Researcher at CCC, said: “Clatterbridge is participating in this important research study, inviting patients, families, and healthcare professionals to help shape the future of cancer care for autistic patients.
“The study seeks to create bespoke informational resources for autistic patients with cancer, as well as recommendations and guidance for accessible cancer services.
This is a unique opportunity to make a positive contribution to the care and treatment experiences of autistic patients, through cancer services that are inclusive and supportive.”
If you or someone you know would like to take part, please contact the research team directly. Personalised arrangements can be made for interviews to ensure participants can contribute in a way that works best for them. For more information or to express interest in taking part, please contact: jennifer.kirton@liverpool.ac.uk
