A qualitative exploration of information access and provision for cancer survivors experiencing chronic bowel symptoms after pelvic radiotherapy: informing a framework to guide improvements to information provision

Abstract

Abstract Purpose For people living with and beyond cancer, access to clear, accurate, relevant information is crucial for meaningful participation in shared decision-making and is associated with better quality-of-life. Many cancer patients who undergo pelvic radiation experience chronic bowel symptoms, decreasing quality-of-life. We aimed to explore information access among survivors with experience of chronic bowel symptoms and develop a framework to guide future information provision. Methods We conducted cross-sectional, semi-structured interviews with 28 cancer survivors (14 prostate, 10 gynecological, 4 anal/rectal) with experience of chronic bowel symptoms after pelvic radiotherapy, and 19 health professionals who provide treatment and care for survivors with these symptoms. Participants were recruited through UK cancer charities and National Health Service hospitals. Data were analyzed thematically. Findings informed a framework to guide improvements to information provision, developed with a patient panel. Results Data were organized to reflect survivor experiences with information access and provision at different points along their cancer journey: Pre-treatment; Recognizing Symptoms; Managing S ymptoms; and two cross-cutting categories of Information Sources and Challenges in Information Provision. The framework encompasses information purpose and channels, survivors’ information needs at different time points and challenges and considerations for implementation. Conclusion Access to timely, relevant, accurate information was an issue across the cancer pathway for this survivor group. Participants reported disparate information needs which could not have been fully known at treatment outset, and which changed over time. Our framework offers a potential starting point for efforts to improve information access and provision.