Patient-reported outcomes and health-related quality of life in people living with ileostomies: A population-based, cross-sectional study
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Patient-reported outcomes and health-related quality of life in people living with ileostomies: A population-based, cross-sectional study. / Rud, Charlotte L; Baunwall, Simon Mark Dahl; Bager, Palle; Dahlerup, Jens Frederik; Wilkens, Trine L; Tøttrup, Anders; Lal, Simon; Hvas, Christian Lodberg.
I: Diseases of the Colon & Rectum, Bind 65, Nr. 8, 2022, s. 1042-1051.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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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 -
ID: 315476428