Does the impact of a colostomy on quality of life change with time? – Prospective evaluation in rectal cancer patients

Aim Improved outcomes after treatment for rectal cancer (RC) have resulted in more long‐term survivors, some with a permanent colostomy. The challenges associated with a stoma may impact health‐related quality of life (HRQoL) and change over time. We report changes in stoma‐related sequelae and HRQoL from a prospective follow‐up program. Methods Patients were included from a systematic late sequelae screening program using patient‐reported outcome measures. Patients undergoing RC surgery with a permanent colostomy were included. Patients completed the colostomy impact (CI) score and EuroQol five‐dimensional five‐level (EQ‐5D‐5L) at 3, 12, 24 and 36 months after surgery. CI scores and mean EQ‐5D‐5L scores were compared, and multivariable regression analysis was performed to explore potential risk factors for major CI at 12 months. Results A total of 301 patients (34% female) were included, with a mean age of 71.2 years. Median CI scores, EQ‐5D‐5L index and EQ‐5D‐5L visual analogue scale scores remained unchanged. However, the distribution of the individual symptoms composing the CI score changed from 3 to 12 months, with more smell and leakage, more parastomal bulging and better self‐care. Between 3 and 12 months, 27% of patients shifted CI category and around 20% of patients shifted category at 2 and 3 years post surgery. Logistic regression showed a significantly higher risk of major CI at 12 months in younger patients, patients with higher American Society of Anaesthesiologists scores, preoperative radiotherapy or postoperative complications. Conclusion Stoma‐related sequelae change during the first years after surgery. However, this is not reflected in CI Score or generic HRQoL.