Understanding the Needs of Autistic Adults during Cancer Treatment
Research type
Research Study
Full title
Understanding the Needs of Autistic Adults with Cancer during Cancer Treatment
IRAS ID
340914
Contact name
Mary Gemma Cherry
Contact email
Sponsor organisation
The University of Liverpool
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
Autistic people experience similar rates of cancer compared to age-matched controls, yet are twice as likely to die from cancer than the neurotypical population. Differences in outcomes have theoretically been attributed to inequalities in oncological care. Clinical communication with autistic patients is a barrier to accessing wider healthcare which has an impact on both engagement with services by autistic people and the quality of care that they receive. That is, although autistic people face the same preventable health problems as the general population, they can experience worse outcomes because they are less likely to approach healthcare services or have successful interactions with them. ‘Effectively improving healthcare for autistic people’ is one of the top research priorities identified by Autistica’s 2024 research priority setting exercise in recognition of the significant health inequalities autistic people experience. However, despite increasing prevalence rates of autism diagnosis and evidence to suggest considerable underdiagnosis there is a paucity of research regarding cancer care for this patient group.
This participatory research study will explore autistic patients’, their relatives’, and staff’s experience of cancer care. The study will use evidenced-based co-design (a method previously used successfully with autistic people in healthcare settings) and will ensure meaningful participation of autistic people in line with recommendations of the NHS 5-year autism research strategy. Data generated from qualitative interviews with patients (n =15-20), relatives (n=12-15) and healthcare professionals (n=12-15) will inform a series of workshops in which key stakeholders will co-produce recommendations and create patient and practitioner-facing information to immediately shape clinical care. This research seeks to fill the gap in the current evidence base and provide an easy-to-implement intervention to reduce the health inequalities currently experienced by autistic patients in the North West (NW).
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
25/NE/0069
Date of REC Opinion
15 May 2025
REC opinion
Further Information Favourable Opinion