The impact of diagnosis on health-related quality of life in people with coeliac disease: a UK population-based longitudinal perspective.
Coeliac disease
Health economics
Quality of life
Journal
BMC gastroenterology
ISSN: 1471-230X
Titre abrégé: BMC Gastroenterol
Pays: England
ID NLM: 100968547
Informations de publication
Date de publication:
02 May 2019
02 May 2019
Historique:
received:
20
08
2018
accepted:
08
04
2019
entrez:
4
5
2019
pubmed:
3
5
2019
medline:
17
5
2019
Statut:
epublish
Résumé
Before diagnosis, people with coeliac disease suffer reduced quality of life, which improves substantially after the disease has been diagnosed. Delayed diagnosis is common. The aim of this study was to assess changes over time in prevalence of coeliac disease symptoms/associated medical conditions, time to diagnosis, quality of life and its determinants before and after diagnosis in the United Kingdom. A postal questionnaire was designed in 2015 and sent to 4000 individuals with diagnosed coeliac disease, requesting information on respondents' socio-demographic and clinical characteristics, and their quality of life pre- and post-diagnosis using the EQ-5D instrument. Data were analysed and compared with results from a survey conducted in 2006 using descriptive analyses, univariate and multivariable regression methods. The survey response rate was 40%. Sixty-five percent of respondents reported at least 4 symptoms pre-diagnosis, a significant reduction by 13 percentage points (95% CI: -16.9, - 9.4; p-value: < 0.001) compared to 2006. Pre-diagnosis mean duration of symptoms was 12.8 years (SD: 15.3), a non-significant reduction of 0.6 years (95% CI: -2, 0.8; p-value: 0.426) compared to 2006. There was a significant improvement of 0.20 (95% CI: 0.18, 0.22; p-value: < 0.001) in quality of life from pre- (0.65) to post-diagnosis (0.85). Pre-diagnosis values were significantly higher by 0.09 (95% CI: 0.06, 0.12; p-value: < 0.001) than in 2006. Number of symptoms and low income were associated with decreased quality of life. Undiagnosed coeliac disease is associated with a substantial decrement in quality of life. Time to diagnosis has not significantly shortened over the decade 2006-2015, but symptoms are less severe when diagnosis occurs. Harmonising clinical guidelines for intensified active case finding will help improve quality of life of people with coeliac disease.
Sections du résumé
BACKGROUND
BACKGROUND
Before diagnosis, people with coeliac disease suffer reduced quality of life, which improves substantially after the disease has been diagnosed. Delayed diagnosis is common. The aim of this study was to assess changes over time in prevalence of coeliac disease symptoms/associated medical conditions, time to diagnosis, quality of life and its determinants before and after diagnosis in the United Kingdom.
METHODS
METHODS
A postal questionnaire was designed in 2015 and sent to 4000 individuals with diagnosed coeliac disease, requesting information on respondents' socio-demographic and clinical characteristics, and their quality of life pre- and post-diagnosis using the EQ-5D instrument. Data were analysed and compared with results from a survey conducted in 2006 using descriptive analyses, univariate and multivariable regression methods.
RESULTS
RESULTS
The survey response rate was 40%. Sixty-five percent of respondents reported at least 4 symptoms pre-diagnosis, a significant reduction by 13 percentage points (95% CI: -16.9, - 9.4; p-value: < 0.001) compared to 2006. Pre-diagnosis mean duration of symptoms was 12.8 years (SD: 15.3), a non-significant reduction of 0.6 years (95% CI: -2, 0.8; p-value: 0.426) compared to 2006. There was a significant improvement of 0.20 (95% CI: 0.18, 0.22; p-value: < 0.001) in quality of life from pre- (0.65) to post-diagnosis (0.85). Pre-diagnosis values were significantly higher by 0.09 (95% CI: 0.06, 0.12; p-value: < 0.001) than in 2006. Number of symptoms and low income were associated with decreased quality of life.
CONCLUSIONS
CONCLUSIONS
Undiagnosed coeliac disease is associated with a substantial decrement in quality of life. Time to diagnosis has not significantly shortened over the decade 2006-2015, but symptoms are less severe when diagnosis occurs. Harmonising clinical guidelines for intensified active case finding will help improve quality of life of people with coeliac disease.
Identifiants
pubmed: 31046685
doi: 10.1186/s12876-019-0980-6
pii: 10.1186/s12876-019-0980-6
pmc: PMC6498641
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
68Subventions
Organisme : Coeliac UK
ID : BXR00280
Références
Am J Gastroenterol. 2001 Jan;96(1):126-31
pubmed: 11197241
J Am Diet Assoc. 2003 Nov;103(11):1533-5
pubmed: 14576723
Med Decis Making. 2006 May-Jun;26(3):282-93
pubmed: 16751327
Dig Dis Sci. 2007 Apr;52(4):1087-95
pubmed: 17318390
J Hum Nutr Diet. 2007 Oct;20(5):423-30
pubmed: 17845376
World J Gastroenterol. 2008 Jan 7;14(1):46-52
pubmed: 18176960
Dig Liver Dis. 2009 Jan;41(1):15-25
pubmed: 18602354
Aliment Pharmacol Ther. 2010 Apr;31(8):901-10
pubmed: 20096017
Dig Liver Dis. 2010 Oct;42(10):685-91
pubmed: 20399159
BMC Health Serv Res. 2010 Apr 27;10:105
pubmed: 20423498
Rev Esp Enferm Dig. 2010 Jul;102(8):466-71
pubmed: 20670066
J Hum Nutr Diet. 2011 Oct;24(5):479-86
pubmed: 21605198
J Hum Nutr Diet. 2011 Dec;24(6):582-7
pubmed: 21615555
BMC Gastroenterol. 2011 Nov 07;11:118
pubmed: 22060243
J Hum Nutr Diet. 2012 Jun;25(3):233-8
pubmed: 22364496
Clin Gastroenterol Hepatol. 2013 Jun;11(6):645-53
pubmed: 23357490
BMC Gastroenterol. 2013 Apr 30;13:75
pubmed: 23631482
Scand J Gastroenterol. 2013 Jul;48(7):801-7
pubmed: 23697749
Arch Dis Child. 2013 Oct;98(10):806-11
pubmed: 23986560
Am J Gastroenterol. 2014 May;109(5):757-68
pubmed: 24667576
Gut. 2014 Aug;63(8):1210-28
pubmed: 24917550
Am J Gastroenterol. 2014 Sep;109(9):1304-11
pubmed: 24980880
Scand J Gastroenterol. 2014 Nov;49(11):1304-10
pubmed: 25139307
United European Gastroenterol J. 2015 Apr;3(2):106-20
pubmed: 25922671
J Clin Gastroenterol. 2016 Apr;50(4):307-12
pubmed: 26084006
Aliment Pharmacol Ther. 2015 Sep;42(6):753-60
pubmed: 26206401
J Clin Gastroenterol. 2016 Mar;50(3):239-43
pubmed: 26280705
Postgrad Med J. 2015 Nov;91(1081):622-6
pubmed: 26310267
BMJ. 2015 Oct 05;351:h4347
pubmed: 26438584
Arq Gastroenterol. 2015 Jul-Sep;52(3):171-5
pubmed: 26486281
Dig Liver Dis. 2016 Oct;48(10):1148-54
pubmed: 27401607
Gut. 2018 Aug;67(8):1410-1424
pubmed: 29440464
Aliment Pharmacol Ther. 2018 Jul;48(1):78-86
pubmed: 29733115
United European Gastroenterol J. 2018 May;6(4):567-575
pubmed: 29881612
Br Med J (Clin Res Ed). 1983 Jan 8;286(6359):95-7
pubmed: 6401509
Health Econ. 1996 Mar-Apr;5(2):141-54
pubmed: 8733106