Information and counselling needs of patients with major low anterior resection syndrome : a qualitative study

Aims and objectives: The aim was to explore the information and counselling needs of rectal cancer survivors confronted with major low anterior resection syndrome. Background: Rectal cancer survivors are often confronted with bowel problems after surgery. This is called low anterior resection syndrome. Patients are unsure what to expect after treatment and healthcare professionals often underestimate the impact of low anterior resection syndrome on patients' lives. Design: A qualitative study with a grounded theory approach was conducted. Methods: Patients were recruited between 2017 and 2019 in three hospitals, and a call was distributed in two patients' organisations. Semi-structured interviews with patients confronted with major low anterior resection syndrome were performed. An iterative process between data collection and data analysis was used. Data analysis was done using the constant comparative method, and investigators' triangulation was applied. Qualitative data were reported following COREQ guidelines. The study was registered at Clinicaltrials.gov NCT04896879. Results: A total of 28 patients were interviewed until theoretical data saturation. Before surgery patients' need for information varied according to their individual coping mechanisms. Some patients required information before surgery, while others considered this too overwhelming. When confronted with LARS, patients desired that healthcare professionals recognised its impact and clarified its expected evolution. A proactive counselling with an easy accessible and approachable healthcare professional was beneficial. Conclusion: Patients expressed several needs regarding the information before rectal cancer surgery and counselling of low anterior resection syndrome after surgery. Relevance to clinical practice: Better knowledge and understanding of major low anterior resection syndrome and its challenges by healthcare professionals are crucial. Especially the impact on quality of life is significant for patients and underestimated by healthcare professionals. Information before surgery and counselling when confronted with major low anterior resection syndrome should be optimised and tailored to patients' needs