AIM: The Ostomy Life Study 2019 aimed to obtain a better understanding of the challenges faced by people with stoma. METHODS: Online survey with participants from 17 countries. FINDINGS: Of the 54 614 individuals invited to take part, 5187 responded; 62% of the respondents avoided physical and social activities because of their stoma and 37% had never consulted their stoma care nurse to have the fit of their stoma product checked. In a subgroup receiving questions on leakage (n=4209), output under the baseplate and leakage onto clothes were experienced within the previous month by 76% and 26% of respondents, respectively. Higher chance of leakage was associated with an irregular stoma shape and peristomal body profile; a stoma level at or below the skin surface; and the presence of creases, folds and other changes in the peristomal area. CONCLUSION: Leakage and access to a stoma care nurse to provide the necessary care and guidance remain important concerns for individuals with a stoma.

Advanced Practice Nurse Ostomy and Wound Care University of Chicago Medicine Chicago Illinois USA

Clinical Nurse Consultant Stomal Therapy Wound Management Department Division of Surgery Queensland Australia

Clinical Nurse Specialist Wound Ostomy and Continence London Health Sciences Centre London Ontario Canada

Enterostomal Therapist Masaryk Hospital Surgery Department Ústí nad Labem Czech Republic

Enterostomal Therapist Montreal Canada

Enterostomal Therapist The Stoma Clinic Herlev Hospital Herlev Denmark

Evidence Manager Coloplast A S Humlebaek Denmark

Lead Medical Specialist Coloplast A S Humlebaek Denmark

previously Nurse Consultant Stoma Care Bristol; North Somerset and South Gloucestershire Clinical Commissioning Group Bristol UK

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