Background: The impact of a stoma on long-term health-related quality of life in people living with ileostomies is not clear. 

Objective: This study aimed to describe important patient-reported outcomes and health-related quality of life in people with ileostomies. 

Design: This is a population-based, cross-sectional study. Patients were invited to answer questionnaires estimating stoma-specific and generic health-related quality of life (EQ-5D-5L and the Major Depression Inventory). Danish norms were retrieved from reference literature. 

Settings: This study was conducted at the major stoma clinic at Aarhus University Hospital, Denmark. 

Patients: We invited all patients with ileostomies who were in contact with the clinic between 2012 and 2017. 

Main outcome measures: The primary outcomes measured were patient-reported outcomes specific to people with ileostomies. 

Results: Of 621 identified patients (50% women), 412 (67%) responded to the survey. Among the responders, 178 (43%) reported that they still had an ileostomy at the time of the survey and were included in the analysis. Fatigue was frequent; 68% (95% CI 60%-75%) reported being tired and 26% (95% CI 20%-33%) answered that they were "always tired," whereas 43% (95% CI 36%-51%) lacked energy, 62% (95% CI 54%-69%) reported poor sleep, and 59% (95% CI 52%-66%) needed to rest during the day. Fifty-six percent (95% CI 48%-63%) needed to know the immediate location of the nearest toilet, and 58% (95% CI 51%-66%) felt sexually unattractive because of their ileostomy. Health-related quality of life measured with generic questions indicated 0.124 points lower health-related quality of life than the Danish norm (p < 0.001), and 18% (95% CI 13%-25%) scored above the threshold for depression, which is 2.6 times higher than the background population (7%, 95% CI 6%-9%; p < 0.001). 

Limitations: This study was limited by potential selection bias, and all participants did not answer all items. 

Conclusions: Fatigue and low health-related quality of life is common in people living with ileostomies. Addressing fatigue and stoma-specific challenges in patients with an ileostomy is warranted. See Video Abstract at http://links.lww.com/DCR/B803.