CF - cancer interview study
Research type
Research Study
Full title
Understanding, and identifying ways to optimise, provision of and engagement with cancer screening and surveillance information, support and care in cystic fibrosis centres: a qualitative interview study.
IRAS ID
350855
Contact name
Laura Ashley
Contact email
Sponsor organisation
Leeds Beckett University
Duration of Study in the UK
1 years, 4 months, 31 days
Research summary
Background
Medical advances have hugely improved life expectancy for people with cystic fibrosis (CF). As people with CF live longer, it has become apparent they have an increased risk of developing cancer at a younger age, especially bowel cancer. People with CF are cared for by specialists in one of 26 UK adult CF-centres. It is recommended CF care now includes a focus on cancer prevention and early detection, tailored to the needs of this group. For example, guidelines recommend people with CF are offered bowel cancer screening using colonoscopy from age 40. CF-centres have begun to offer cancer screening and surveillance information, support, and care – but provision is unequal and underdeveloped.Aim
To understand:
• What CF teams are providing in terms of cancer screening and surveillance information, support and care, and the factors that influence this.
• The experiences, challenges, and needs of people with CF around receiving and engaging with cancer screening and surveillance information, support and care.
• Ways to improve the accessibility and effectiveness of cancer screening and surveillance information, support and care across UK CF-centres.Methods
We will interview 25-30 people with CF and 25-30 CF clinicians (e.g., consultants, specialist nurses, psychologists). We will recruit from 5-7 CF-centres. Interviews will examine the information, support, and care CF teams provide around cancer screening and surveillance and how people with CF engage with it, covering aspects of practice and services that work well and suggestions for improvement. Interviews will be analysed by developing themes that describe and explain the data.Outputs
We will use findings to:
• Develop practice recommendations for CF teams.
• Improve information and support resources for people with CF.
• Identify intervention areas and strategies for future research (e.g., toolkits for CF teams to support shared decision-making about colonoscopy screening, new models of collaborative care in this area).REC name
West of Scotland REC 3
REC reference
25/WS/0030
Date of REC Opinion
5 Mar 2025
REC opinion
Favourable Opinion