Understanding colorectal cancer patient follow-up: a qualitative interview study

Purpose There are increasing numbers of patients who have been treated for colorectal cancer (CRC) who struggle with ongoing physical and psychological symptoms. ‘Cancer survivor’ is often used to describe these patients but this terminology remains controversial. This study sought to understand the follow-up experience of CRC patients in the UK and identify the terminology they prefer following diagnosis and treatment. Methods Purposeful sampling of patients from specialist CRC follow-up clinics was performed until data saturation was achieved. Two 1:1 semi-structured qualitative interviews were performed for each participant. Data were analysed thematically. Results Seventeen participants, median age = 62, 53% male were interviewed. Several themes were identified. Of note, fear of cancer recurrence dominates patients’ agendas at follow-up appointments. There are also clinical and administrative barriers to discussing symptoms including being embarrassed, feeling that their symptoms were not relevant or not having enough time to discuss issues. However, there are several methods which may improve this, such as through the use of video consultations and questionnaires. In addition, patients identified inadequate holistic support despite significant psychological and social distress. Our data suggest that labelling a diverse group of patients as ‘cancer survivors’ can be problematic. Conclusion It is important that clinicians systematically screen patients for symptoms that are known to occur following treatment. Clinicians and patients should have routine access to pathways and programmes that can support patients in navigating their life after cancer therapy.