‘It was hell on earth’: perspectives of people living with celiac disease on diagnostic delay
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. Method...
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| Published in: | Journal of human nutrition and dietetics Vol. 37; no. 6; pp. 1486 - 1495 |
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| Main Authors: | , , , , , , |
| Format: | Journal Article |
| Language: | English |
| Published: |
England
Blackwell Publishing Ltd
01-12-2024
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| Subjects: | |
| Online Access: | Get full text |
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| Summary: | 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
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
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
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.
Key points
Factors contributing to diagnostic delay included varying and inadequate knowledge about celiac disease (CD) among general practitioners (GP) and informants. This highlights the importance of ensuring more consistent and frequent use of existing clinical guidelines in GPs' screening for CD and implementing initiatives to increase public awareness of CD and its diverse symptoms.
For informants, diagnostic delays resulted in mistrust in the healthcare system, decreased physiological well‐being and decreased psychological well‐being due to changes in self‐perception and self‐blame. This signals the importance of increasing GPs' awareness of approaching patients with understanding in a nonstigmatising manner. |
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| Bibliography: | Sofia Sif Overby Fjorback and Fiona Ryom Eskildsen have contributed equally to this work. Current workplace Anna Fowler Lund, HK Kommunal, Weidekampsgade 8, 2300 Copenhagen South, Denmark ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 |
| ISSN: | 0952-3871 1365-277X 1365-277X |
| DOI: | 10.1111/jhn.13370 |