'It was hell on earth': perspectives of people living with celiac disease on diagnostic delay.
celiac disease
diagnostic delay
neoliberalism
new public health
qualitative analysis
thematic network analysis
Journal
Journal of human nutrition and dietetics : the official journal of the British Dietetic Association
ISSN: 1365-277X
Titre abrégé: J Hum Nutr Diet
Pays: England
ID NLM: 8904840
Informations de publication
Date de publication:
16 Sep 2024
16 Sep 2024
Historique:
revised:
26
08
2024
received:
17
06
2024
accepted:
28
08
2024
medline:
17
9
2024
pubmed:
17
9
2024
entrez:
17
9
2024
Statut:
aheadofprint
Résumé
Celiac disease (CD) is underdiagnosed and associated with diagnostic delays. This has long-term consequences for the health and well-being of people living with the condition. Little is known about the qualitative configurations of the assessment processes of people living with CD. Using a thematic network analysis of 24 in-depth interviews, this study explored the experiences of people living with CD related to their assessment processes leading to being diagnosed. A significant diagnostic delay (up to 26 years) was evident in many interviews. Factors contributing to diagnostic delay included limited knowledge about CD among general practitioners (GP) and in the general population, categorisations of symptoms as 'typical' or 'atypical' and psychosomatic explanations of symptoms. Diagnostic delay resulted in (1) decreased psychological well-being due to severe symptoms, changes in self-perception and self-blame; (2) decreased physiological well-being due to comorbidities; and (3) mistrust in the healthcare system, leading to an increase in informants' responsibility for expediting their assessment processes. This suggested the presence of a neoliberal tendency because informants felt they were primarily responsible for their assessment processes. We encourage the implementation of initiatives to increase awareness of CD among GPs as well as more consistent and frequent use of the screening guideline due to variations in its clinical presentation. Increased awareness and consistency could reduce variations in assessment processes given GPs' varying knowledge about the condition.
Sections du résumé
BACKGROUND
BACKGROUND
Celiac disease (CD) is underdiagnosed and associated with diagnostic delays. This has long-term consequences for the health and well-being of people living with the condition. Little is known about the qualitative configurations of the assessment processes of people living with CD.
METHODS
METHODS
Using a thematic network analysis of 24 in-depth interviews, this study explored the experiences of people living with CD related to their assessment processes leading to being diagnosed.
RESULTS
RESULTS
A significant diagnostic delay (up to 26 years) was evident in many interviews. Factors contributing to diagnostic delay included limited knowledge about CD among general practitioners (GP) and in the general population, categorisations of symptoms as 'typical' or 'atypical' and psychosomatic explanations of symptoms. Diagnostic delay resulted in (1) decreased psychological well-being due to severe symptoms, changes in self-perception and self-blame; (2) decreased physiological well-being due to comorbidities; and (3) mistrust in the healthcare system, leading to an increase in informants' responsibility for expediting their assessment processes. This suggested the presence of a neoliberal tendency because informants felt they were primarily responsible for their assessment processes.
CONCLUSIONS
CONCLUSIONS
We encourage the implementation of initiatives to increase awareness of CD among GPs as well as more consistent and frequent use of the screening guideline due to variations in its clinical presentation. Increased awareness and consistency could reduce variations in assessment processes given GPs' varying knowledge about the condition.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Købmand I Odense Johan og Hanne Weimann Født Seedorffs Legat
Informations de copyright
© 2024 The Author(s). Journal of Human Nutrition and Dietetics published by John Wiley & Sons Ltd on behalf of British Dietetic Association.
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