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.

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 specialist teams 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: Guidelines recommend people with CF are offered bowel cancer screening using colonoscopy from age 40, and for people with a transplant from age 30. There are calls for CF teams to promote and support participation in cervical screening. Studies show low rates of cervical cancer vaccination and screening among people with CF. It is suggested people with CF may benefit from cancer surveillance education around self-examination and early help-seeking for symptoms. CF-centres have begun to offer cancer screening and surveillance information, support, and care – but provision is unequal and underdeveloped. For example, what is offered varies across centres, which can be a source of worry for patients, and patient information and education materials are not always informed by research and patient involvement, to optimise effectiveness and inclusivity. Aim To conduct the first qualitative study in this area. To understand: What CF teams are providing in terms of cancer screening and surveillance information, support and care, and the driving factors and barriers 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, including Leeds, Newcastle, and London Brompton. Interviews will examine the information, support, and care that CF teams provide around cancer screening and surveillance and how people with CF engage with it. We will explore the experiences, views, challenges, and needs of clinicians and patients, covering aspects of practice and services that work well and suggestions for improvement. Interviews will be analysed using the framework method to develop themes that describe and explain the data. Outputs We will use findings to: Develop practice recommendations and guidance for CF teams concerning understanding and meeting patients information, support, and care needs around CF-related cancer risk and screening. 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 cervical screening promotion or shared decision-making discussions about colonoscopy screening, new models of collaborative care in this area). PPI Six people with CF have helped develop this proposal, two of whom have had cancer at young ages (four are co-applicants). This PPI-group will be involved in all research stages, including pilot interviews, data analysis, and producing study outputs. PPI representatives will receive appropriate training and payment.