CF - bowel cancer interview study
Research type
Research Study
Full title
Optimising bowel cancer screening and surveillance for people with cystic fibrosis: a qualitative study to identify and understand clinician and patient challenges and needs and ways to address these
IRAS ID
355031
Contact name
Laura Ashley
Contact email
Sponsor organisation
Leeds Beckett University
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
Bowel cancer screening and surveillance (BCSS) for people with cystic fibrosis (CF)
Background
People with CF have a higher risk of developing bowel cancer, and at a younger age (e.g., in their 20s-40s), than the general population. BCSS can prevent bowel cancers by removing pre-cancerous cells and catch bowel cancers early when more treatable. People with CF require more intensive bowel cancer screening than standard. The CF Foundation recommends colonoscopy screening from age-40 (age-30 for transplant-recipients).
People with CF are cared for by multidisciplinary teams in one of 26 adult UK CF-centres. CF-centres have begun to introduce tailored BCSS – but provision is unequal and underdeveloped. No research has asked clinical teams or people with CF about ways to support and improve tailored BCSS for people with CF, and ensure it is inclusive and effective.
Aims
The first qualitative study to identify and understand:
• the challenges and barriers to providing tailored BCSS for people with CF, and ways to address these
• the needs and preferences of people with CF around BCSS information, support, and care
Methods
We will interview 15-20 people with CF and 15-20 clinicians (e.g., CF consultants, specialist nurses, colonoscopists, psychologists) recruited from multiple CF-centres and affiliated local endoscopy departments. Interviews will examine challenges and support needs of clinicians and people with CF around providing and receiving tailored BCSS information and care.
Outputs
We will use the findings to inform and develop:
• guidance-information and practice recommendations for clinical teams
• BCSS information and support resources for people with CF
• interventions to evaluate in future research (e.g., BCSS-related training for CF-teams; models of care for providing colonoscopy screening).
Patient and Public Involvement (PPI)
Six people with CF have developed this research with us. Our PPI-group will be involved in all stages of the research.REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
25/SW/0030
Date of REC Opinion
26 Mar 2025
REC opinion
Favourable Opinion