Purpose
To address the educational gaps and support needs of patients with low anterior resection syndrome (LARS) following rectal cancer surgery. The LARSCAT project aimed to develop comprehensive resources to better inform patients and enhance their quality of life.
Methods
A qualitative study was conducted between November 2022 and March 2023. Seven focus groups were formed, including six patients, two surgeons, and three nurses. Patients had undergone rectal cancer surgery with stoma reversal 2 to 12 years earlier, and all experienced major LARS. The focus groups, held in-person and online, explored the impact on daily life, social and sexual health, mood, rest, and relationships. Thematic analysis was performed to identify key issues and support strategies following the COREQ guidelines.
Results
Participants reported insufficient information regarding potential dysfunctions after rectal cancer surgery, and difficulties finding reliable information online. The timing of receiving information varied according to individual coping mechanisms. LARS symptoms significantly impacted daily life, social activities, sexual health, and mood. Patients emphasised the need for more tailored information and supplementary written materials to read at their own pace. Consequently, three comprehensive documents were created and made available online.
Conclusion
This study highlights a significant gap in patient education on the long-term effects of rectal cancer surgery. The resources developed by the LARSCAT project aim to provide essential support to patients and healthcare professionals. Future research should focus on integrating these resources into routine care and evaluating their impact on patient outcomes and quality of life.
Supplementary Information
The online version contains supplementary material available at 10.1007/s00384-024-04775-9.