Predicting life with a permanent end colostomy: A prospective study on function, bother and acceptance.

Aim: The factors that influence a patient's experience of a colostomy are not known. The aim of this study was to characterise stoma function, stoma-related bother and acceptance among patients operated for rectal cancer and to investigate if there were any preoperative personal factors with predictive impact on long-term stoma-related bother.

Methods: The QoLiRECT (Quality of Life in RECTal cancer) study is a prospective multicentre study of patients with rectal cancer. This was a subgroup analysis of patients with a permanent colostomy with a 2-year follow-up. Penalised regression models with shrinkage estimation were used to predict the 1-and 2-year bother using baseline data. The predictive value and the importance of the included variables were evaluated using bootstrap resampling techniques.

Results: A total of 379 patients were included. Overall stoma acceptance was high and a majority of patients were not bothered by their stoma; 77% and 83% at 1 and 2 years, respectively. The subgroup of patients with stoma-related bother had a high prevalence of difficulties, especially fear of leakage, and a low stoma acceptance in daily life. Both clinical and personal factors were associated with stoma-related bother. The most important factors were quality of life and physical health, but the prediction accuracy was low.

Conclusions: Stoma-related bother was associated with overall stoma dysfunction. As stoma-related bother is a multifactorial problem, it was not possible to predict which patients will experience stoma-related bother. It is therefore of importance to prevent stoma-related symptoms and optimise stoma function to reduce long-term bother and increase stoma acceptance.