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The burden of celiac disease and the value of having it diagnosed
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-2021-0028-7401
2012 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Bördan av att leva med celiaki och värdet av att bli diagnostiserad (Swedish)
Abstract [en]

Background: Celiac disease is a chronic disease characterized by intolerance to gluten. It is considered a public health problem affecting about 1% of Western populations, but, with most cases still undiagnosed. A glutenfree diet is the only effective treatment for the disease.

Objectives: To investigate the burden of celiac disease and the value of having it diagnosed. Additionally, the implications for a potential future celiac disease mass screening are discussed.

Methods: A questionnaire was sent during 2009 to 1,560 randomly selected adult members of the Swedish Society for Coeliacs, in equal-sized age- and sex strata, and 1,031 (66%) responded. Members were asked about symptoms, health-related quality of life as measured by EQ-5D, and health care consumption during the year prior to diagnosis and during the past year. They were also asked about the delay in having their celiac disease diagnosed and the appearance of other immune-mediated diseases. A school-based celiac disease screening of 12-year-olds was performed during 2005-2006. After blood sampling the 7,567 participating children and their parents received a questionnaire including the EQ-5D instrument in order to measure the child’s health-related quality of life. Comparisons were made between children with screening-detected celiac disease, those with previously diagnosed disease and those without the disease. Parents were asked about their willingness to pay for a celiac disease screening of their child, which was compared with the actual cost of a screening.

Results: Adult celiac disease patients had a poorer health-related quality of life than the general population, and a high prevalence of symptoms before celiac disease diagnosis. The mean delay from symptoms to diagnosis was 9.7 years. After initiated treatment with a gluten-free diet, health-related quality of life was improved to the level of the general population, and symptom relief and reduction in health care consumption were also reported. For children, health-related quality of life was similar across groups. The average cost per child for a screening was 47 EUR. Parents’ mean willingness to pay for a screening was 79 EUR, median 10 EUR.

Conclusion: The delay in celiac disease diagnosis is long, and treatment with a gluten-free diet substantially improved health for clinically detected cases. For screening-detected celiac disease the health benefits are still uncertain. A mass screening might nevertheless be justified to avoid the burden of living with undiagnosed disease, and parents’ willingness to pay indicates that performing it in childhood might be economically motivated. However, as both the cost-effectiveness of a screening and the short- and long term health benefits for screening-detected cases have not yet been sufficiently investigated, it is too early to make a recommendation for a celiac disease mass screening.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet , 2012. , 68 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1489
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health; Epidemiology
Identifiers
URN: urn:nbn:se:umu:diva-54058ISBN: 978-91-7459-392-1 (print)OAI: oai:DiVA.org:umu-54058DiVA: diva2:515512
Public defence
2012-05-11, Aulan, vårdvetarhuset, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2012-04-20 Created: 2012-04-12 Last updated: 2015-04-29Bibliographically approved
List of papers
1. A gluten-free diet effectively reduces symptoms and health care consumption in a Swedish celiac disease population
Open this publication in new window or tab >>A gluten-free diet effectively reduces symptoms and health care consumption in a Swedish celiac disease population
(English)Manuscript (preprint) (Other academic)
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health; Epidemiology
Identifiers
urn:nbn:se:umu:diva-54057 (URN)
Available from: 2012-04-12 Created: 2012-04-12 Last updated: 2015-04-29
2. Delay to celiac disease diagnosis and its implications for health-related quality of life
Open this publication in new window or tab >>Delay to celiac disease diagnosis and its implications for health-related quality of life
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2011 (English)In: BMC Gastroenterology, ISSN 1471-230X, E-ISSN 1471-230X, Vol. 11, no 1, 118- p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: To determine how the delay in diagnosing celiac disease (CD) has developed during recent decades and how this affects the burden of disease in terms of health-related quality of life (HRQoL), and also to consider differences with respect to sex and age.

METHODS: In collaboration with the Swedish Society for Coeliacs, a questionnaire was sent to 1,560 randomly selected members, divided in equal-sized age- and sex strata, and 1,031 (66%) responded. HRQoL was measured with the EQ-5D descriptive system and was then translated to quality-adjusted life year (QALY) scores. A general population survey was used as comparison.

RESULTS: The mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years. The delay has been reduced over time for some age groups, but is still quite long. The mean QALY score during the year prior to initiated treatment was 0.66; it improved after diagnosis and treatment to 0.86, and was then better than that of a general population (0.79).

CONCLUSIONS: The delay from first symptoms to CD diagnosis is unacceptably long for many persons. Untreated CD results in poor HRQoL, which improves to the level of the general population if diagnosed and treated. By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD as a common health problem is needed, and active case finding should be intensified. Mass screening for CD might be an option in the future.

Place, publisher, year, edition, pages
London: BioMed Central, 2011
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:umu:diva-50446 (URN)10.1186/1471-230X-11-118 (DOI)22060243 (PubMedID)
Available from: 2011-12-09 Created: 2011-12-09 Last updated: 2017-12-08Bibliographically approved
3. Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening
Open this publication in new window or tab >>Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening
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2011 (English)In: Journal of Medical Screening, ISSN 0969-1413, E-ISSN 1475-5793, Vol. 18, no 4, 187-192 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To compare the health-related quality-of-life (HRQoL) of children with screening-detected coeliac disease (CD), before they learned of their diagnosis, with that of children without CD and in those previously diagnosed with CD.

METHODS: In a cross-sectional CD screening study ('ETICS': Exploring the Iceberg of Coeliacs in Sweden), of 10,041 Swedish 12-year-olds invited, 7567 (75%) consented to participate, and 7208 (72%) children without previously diagnosed CD had serological markers analysed. Before the screening results were known, 7218 children (72%) and 6524 of their parents (65%) answered questionnaires. Questionnaires included the Swedish child-friendly pilot version of the EQ-5D instrument and proxy version of the EQ-5D instrument, which are generic tools used to describe HRQoL.

RESULTS: We found no significant difference in HRQoL between the groups of children with screening-detected CD, without CD, and those previously diagnosed with CD.

CONCLUSION: The HRQoL reported by 12-year-olds with screening-detected CD, before they learned of their diagnosis, was not worse than that of the children without CD or those previously diagnosed with CD. Thus, mass screening for CD should not be justified on the basis that children with unrecognized CD have a poor HRQoL. However, because these children rated their HRQoL before diagnosis and treatment, they may not have recognized or perceived symptoms as severe enough to seek medical attention which demonstrates how difficult clinical/active case finding can be. Mass screening may still, therefore, be considered if the aim is early detection and prevention of future complications.

Place, publisher, year, edition, pages
Royal Society of Medicine Press, 2011
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-54066 (URN)10.1258/jms.2011.011081 (DOI)22106434 (PubMedID)
Available from: 2012-04-13 Created: 2012-04-13 Last updated: 2017-12-07Bibliographically approved
4. Parents' willingness to pay for coeliac disease screening of their child
Open this publication in new window or tab >>Parents' willingness to pay for coeliac disease screening of their child
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2011 (English)In: Journal of Pediatric Gastroenterology and Nutrition - JPGN, ISSN 0277-2116, E-ISSN 1536-4801, Vol. 52, no 4, 452-459 p.Article in journal (Refereed) Published
Abstract [en]

Swedish parents' WTP for school-based CD screening of their child was higher than the average cost per child; however, only a minority of the parents were willing to pay that amount.

Identifiers
urn:nbn:se:umu:diva-43310 (URN)10.1097/MPG.0b013e3182037efd (DOI)21407104 (PubMedID)
Available from: 2011-04-27 Created: 2011-04-27 Last updated: 2017-12-11Bibliographically approved

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