Ulcerative Colitis Narrative Global Survey Findings: The Impact of Living With Ulcerative Colitis-Patients' and Physicians' View.
inflammatory bowel disease
patient survey
quality of life
ulcerative colitis
Journal
Inflammatory bowel diseases
ISSN: 1536-4844
Titre abrégé: Inflamm Bowel Dis
Pays: England
ID NLM: 9508162
Informations de publication
Date de publication:
20 10 2021
20 10 2021
Historique:
received:
03
06
2020
pubmed:
3
2
2021
medline:
22
12
2021
entrez:
2
2
2021
Statut:
ppublish
Résumé
The Ulcerative Colitis (UC) Narrative is a global patient and physician survey aimed at identifying the impact of UC and comparing and contrasting perceptions of UC burden and management approaches. Surveys of patients with UC (self-reported diagnosis; n = 2100) and physicians (n = 1254) were completed across 10 countries by The Harris Poll between August 2017 and February 2018. Questionnaires covered multiple aspects of UC, including diagnosis, treatment, and impact on patient quality of life, in addition to standard demographic information. Descriptive statistics are reported. The majority of patients (82%) had moderate to severe UC (based on medication history; those who had only ever taken 5-aminosalicylates were excluded); 67% described their UC as controlled with few to no symptoms. On average, patients experienced 4.3 flares (standard deviation, 7.4) in the past year. Diagnostic delay was on average 2.0 years (standard deviation, 5.4); 42% of patients waited ≥1 year. Most patients (65%) felt that UC controlled their life rather than them controlling their disease. Because of the fear of repercussions, many patients had not disclosed their UC to their employer. Discussion of the emotional impact of UC during routine appointments was less of a priority for physicians, compared with patients. The data from this global survey highlight that patients with UC experience diagnostic delay, poor disease control, and adverse impact on their quality of life. Patients report UC to be a mentally exhausting condition; however, emotional and mental health issues are infrequently discussed at routine appointments.
Sections du résumé
BACKGROUND
The Ulcerative Colitis (UC) Narrative is a global patient and physician survey aimed at identifying the impact of UC and comparing and contrasting perceptions of UC burden and management approaches.
METHODS
Surveys of patients with UC (self-reported diagnosis; n = 2100) and physicians (n = 1254) were completed across 10 countries by The Harris Poll between August 2017 and February 2018. Questionnaires covered multiple aspects of UC, including diagnosis, treatment, and impact on patient quality of life, in addition to standard demographic information. Descriptive statistics are reported.
RESULTS
The majority of patients (82%) had moderate to severe UC (based on medication history; those who had only ever taken 5-aminosalicylates were excluded); 67% described their UC as controlled with few to no symptoms. On average, patients experienced 4.3 flares (standard deviation, 7.4) in the past year. Diagnostic delay was on average 2.0 years (standard deviation, 5.4); 42% of patients waited ≥1 year. Most patients (65%) felt that UC controlled their life rather than them controlling their disease. Because of the fear of repercussions, many patients had not disclosed their UC to their employer. Discussion of the emotional impact of UC during routine appointments was less of a priority for physicians, compared with patients.
CONCLUSIONS
The data from this global survey highlight that patients with UC experience diagnostic delay, poor disease control, and adverse impact on their quality of life. Patients report UC to be a mentally exhausting condition; however, emotional and mental health issues are infrequently discussed at routine appointments.
Identifiants
pubmed: 33529314
pii: 6126719
doi: 10.1093/ibd/izab016
pmc: PMC8528151
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1747-1755Informations de copyright
© 2021 Crohn’s & Colitis Foundation. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation.
Références
Dig Dis Sci. 2017 Jan;62(1):207-216
pubmed: 27817123
BMC Gastroenterol. 2012 Aug 15;12:108
pubmed: 22894661
Lancet. 2017 Apr 29;389(10080):1756-1770
pubmed: 27914657
Intest Res. 2018 Oct;16(4):509-521
pubmed: 30369231
J Crohns Colitis. 2013 Jul;7(6):e206-13
pubmed: 23040449
Eur J Gastroenterol Hepatol. 2016 Sep;28(9):1056-64
pubmed: 27286569
J Crohns Colitis. 2013 Jun;7(5):355-68
pubmed: 22503168
Intest Res. 2016 Jul;14(3):218-23
pubmed: 27433143
Inflamm Bowel Dis. 2017 Apr;23(4):494-501
pubmed: 28296817
J Gastroenterol. 2017 May;52(5):555-567
pubmed: 27470433
Arq Gastroenterol. 2018 Jul-Sep;55(3):290-295
pubmed: 30540094
World J Gastroenterol. 2017 Sep 21;23(35):6474-6481
pubmed: 29085197
Inflamm Bowel Dis. 2016 Mar;22(3):752-62
pubmed: 26841224
Patient Prefer Adherence. 2018 Sep 18;12:1815-1823
pubmed: 30271125
J Crohns Colitis. 2014 Oct;8(10):1281-6
pubmed: 24662394
Aliment Pharmacol Ther. 2009 May 15;29(10):1114-20
pubmed: 19222412
J Crohns Colitis. 2007 Sep;1(1):10-20
pubmed: 21172179
Aliment Pharmacol Ther. 2010 Apr;31(7):693-707
pubmed: 20064142
BMJ Open. 2017 Aug 21;7(8):e017544
pubmed: 28827271
Am J Gastroenterol. 2015 Sep;110(9):1252-6
pubmed: 25848924
Inflamm Bowel Dis. 2021 Jun 15;27(7):1096-1106
pubmed: 33057598
Clin Exp Gastroenterol. 2015 Mar 23;8:111-7
pubmed: 25848313