TY - JOUR

T1 - Patient-reported outcomes and health-related quality of life in people living with ileostomies: A population-based, cross-sectional study

AU - Rud, Charlotte L

AU - Baunwall, Simon Mark Dahl

AU - Bager, Palle

AU - Dahlerup, Jens Frederik

AU - Wilkens, Trine L

AU - Tøttrup, Anders

AU - Lal, Simon

AU - Hvas, Christian Lodberg

N1 - Publisher Copyright: © 2022 Lippincott Williams and Wilkins. All rights reserved.

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - Fatigue

KW - Ileostomy

KW - Inflammatory bowel disease

KW - Patient-reported outcome measures

KW - Quality of life

U2 - 10.1097/DCR.0000000000002100

DO - 10.1097/DCR.0000000000002100

M3 - Journal article

C2 - 34803144

AN - SCOPUS:85134300389

VL - 65

SP - 1042

EP - 1051

JO - Diseases of the Colon and Rectum

JF - Diseases of the Colon and Rectum

SN - 0012-3706

IS - 8

ER -