Methods and Initial Findings of the Observational Study of Ostomy Consumers Registry

Abstract

BACKGROUND: Longitudinal patient-reported data are limited for people living with an ostomy. PURPOSE: The Observational Study of Ostomy Consumers (OSO) registry collects data from individuals living with an ostomy. METHODS: Self-reported data were collected via repeated electronic surveys completed by adults living with an ostomy in the United States (US) and United Kingdom (UK). RESULTS: Baseline data, collected between October 2018 and February 2021, were available for 299 individuals from the US (77.9%) and UK (22.1%). Most participants reported using a 2-piece pouching system (55.5%) rather than a 1-piece system (44.4%), and using a convex barrier (54.4%) or flat barrier (44.3%). The most commonly reported barrier wear times were ≥ 3 to < 4 days for 36.6% of participants in the US and ≥ 1 to < 2 days for 42.4% of participants in the UK. Despite self-reports of leakage and peristomal skin conditions, quality of life remained positive. A majority of participants (92.0%) reported being very satisfied or somewhat satisfied with their ostomy product. CONCLUSION: The Observational Study of Ostomy Consumers registry allows for a continuous data stream that can be mined to help understand the patient experience over time. Understanding patient experiences will help to inform clinical practice and research, health care utilization, and product innovation.