Don't Lose Sleep Over It, Impact of Living With an Ostomy on Sleep Disruptions: Results From a US Survey and Multinational Ostomy Clinical Registry.

Abstract

Purpose: The purpose of this study was to describe the influence of living with an ostomy on sleep disruptions using data from a self-reported survey and multinational clinical registry of individuals living with an ostomy.

Design: Cross-sectional survey and clinical registry.

Subjects and setting: Survey data were collected from 5648 respondents living in the US with an ostomy, using any manufacturer's product; these data were collected from October 2021 to April 2022. In addition, clinical registry data were extracted from 206 respondents living in the UK, US, and Canada, using all data available as of December 2022.

Methods: An electronic survey focusing on sleep was distributed through an industry-sponsored ostomy patient support program, product supply distributor, and ostomy patient association. Participation was anonymous, voluntary, and without compensation. Participants in the multinational registry completed monthly or quarterly electronic questionnaires that included information on sleep quality and sleep disruptions. Inferential analyses were conducted using Fisher exact test and chi-square test (χ2).

Results: Nearly half of the Sleep Survey respondents (n = 2676 of 5648, 47%) reported their pouching system had disrupted their main sleep period over the past 30 days. Seventy-five percent (n = 1845) experienced disruptions weekly, and 31% (n = 760) reported nightly sleep disruptions. Common causes included the need to empty a pouch (64%, n = 1722), leakage of effluent (40%, n = 1068), and worry about pouching system leakage (25%, n = 677). Respondents reporting peristomal skin problems were 1.5 times more likely to experience sleep disruptions (P < .001), while individuals with ileostomies were 1.3 and 1.6 times more likely to report disruptions compared to individuals with colostomies and urostomies, respectively (P < .001). The proportion of registry respondents who reported sleep disruptions in the preceding 30 days was 39% (n = 79). A vast majority (96%, n = 76) reported being bothered by these sleep disruptions.

Conclusions: The prevalence of sleep disruptions among individuals living with an ostomy is high, especially for those living with an ileostomy.