Quality of life in permanent ostomates - what really matters to them?

The impact of a permanent stoma, such as post-abdominoperineal resection (APR), on quality of life (QoL) is well-documented. While stoma-related QoL tools exist, their relationship with stoma satisfaction is unclear. This study aimed to identify which aspects of QoL were most associated with stoma satisfaction.

A cross-sectional study of consecutive patients who had an APR for rectal cancer at an Australian tertiary hospital (2012-2021), identified from a prospectively maintained database, was conducted. The Stoma-QoL questionnaire was used. Overall patient satisfaction with stoma function, and whether healthcare advice was sought for stoma dysfunction, were explored. Linear regression assessed the association between individual issues examined in the Stoma-QoL questionnaire and overall patient satisfaction with stoma function.

Overall, 64 patients (62.5% male, mean 68.1 years) participated. Stoma-QoL score was associated with stoma satisfaction (P < 0.05). QoL items impacting satisfaction were: needing to know nearest toilet location (P = 0.04), pouch smell concerns (P = 0.008), needing daytime rest (P = 0.02), clothing limitations (P = 0.02), sexual attractiveness concerns (P < 0.05), embarrassment (P < 0.05), difficulty hiding the pouch (P = 0.02), concerns about being burdensome (P = 0.04) and difficulty with interpersonal interaction (P = 0.03). Only 11 (17.2%) patients sought healthcare advice for stoma dysfunction.

While stoma-specific QoL is associated with stoma satisfaction, individual QoL aspects impact differently on satisfaction in permanent colostomy patients. These findings may help identify focus areas for peri-operative counselling for clinicians and stomal therapists, highlight the importance of tailored multidisciplinary care in ostomates and suggests that a stoma type-specific Stoma-QoL questionnaire is required.