Impact of ulcerative colitis on patients' lives : results of the Finnish extension of a global ulcerative colitis narrative survey

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Molander , P & Ylänne , K 2019 , ' Impact of ulcerative colitis on patients' lives : results of the Finnish extension of a global ulcerative colitis narrative survey ' , Scandinavian Journal of Gastroenterology , vol. 54 , no. 7 , pp. 869-875 . https://doi.org/10.1080/00365521.2019.1635637

Title: Impact of ulcerative colitis on patients' lives : results of the Finnish extension of a global ulcerative colitis narrative survey
Author: Molander, Pauliina; Ylänne, Karoliina
Contributor organization: Department of Medicine
Gastroenterologian yksikkö
HUS Abdominal Center
Date: 2019-07-03
Language: eng
Number of pages: 7
Belongs to series: Scandinavian Journal of Gastroenterology
ISSN: 0036-5521
DOI: https://doi.org/10.1080/00365521.2019.1635637
URI: http://hdl.handle.net/10138/317381
Abstract: Introduction: The Ulcerative Colitis (UC) Narrative is a global initiative to engage patients with UC, in order to help identify the impact of UC on patients' lives. The aim of the UC Narrative extension survey in Finland was to identify and describe the unmet needs in quality care. Methods: Seventeen Finnish physicians were surveyed in the original UC Narrative survey between 7 December 2017 and 24 January 2018. In the extension phase, Finnish UC patients, recruited through the Finnish patient association, were surveyed from 15 November to 3 December 2018, covering questions on disease characteristics, impact on life, most common challenges in communication with health care professionals (HCPs) and access to care. Results: Five hundred and eight patients with self-reported UC diagnosis participated (137 male [27.0%]). Diagnostic delay was, on average, 2.3 (SD 5.5) years; 14.4% had waited five years or more for diagnosis. Most patients (396; 78.0%) considered themselves to be in remission and rated their overall state of health as 'excellent' or 'good' (303; 59.7%). Most patients (79.6%) were satisfied with the communication with their HCPs, and the majority (74.2%) felt comfortable raising concerns and fears with HCPs. However, the satisfaction in discussing mental and emotional health impacts of UC was lower (44.3%). A relatively large number of patients (38.5%) felt that they would be a more successful person without UC. Conclusions: The UC Narrative survey highlighted the diagnostic delay in UC, challenges in communication with HCPs and the impact of UC on life from the patients' perspective.
Subject: Ulcerative colitis
inflammatory bowel disease
quality of care
diagnosis delay
narrative
INFLAMMATORY-BOWEL-DISEASE
DIAGNOSTIC DELAY
RISK-FACTORS
3121 General medicine, internal medicine and other clinical medicine
Peer reviewed: Yes
Rights: unspecified
Usage restriction: openAccess
Self-archived version: acceptedVersion


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