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Delay to celiac disease diagnosis and its implications for health-related quality of life
Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.ORCID-id: 0000-2021-0028-7401
Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.ORCID-id: 0000-0002-1633-2179
Umeå universitet, Medicinska fakulteten, Institutionen för klinisk vetenskap, Pediatrik. Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin.
Umeå universitet, Medicinska fakulteten, Institutionen för folkhälsa och klinisk medicin, Epidemiologi och global hälsa.
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2011 (Engelska)Ingår i: BMC Gastroenterology, ISSN 1471-230X, E-ISSN 1471-230X, Vol. 11, nr 1, s. 118-Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
London: BioMed Central, 2011. Vol. 11, nr 1, s. 118-
Nationell ämneskategori
Gastroenterologi
Identifikatorer
URN: urn:nbn:se:umu:diva-50446DOI: 10.1186/1471-230X-11-118PubMedID: 22060243OAI: oai:DiVA.org:umu-50446DiVA, id: diva2:463348
Tillgänglig från: 2011-12-09 Skapad: 2011-12-09 Senast uppdaterad: 2018-06-08Bibliografiskt granskad
Ingår i avhandling
1. The burden of celiac disease and the value of having it diagnosed
Öppna denna publikation i ny flik eller fönster >>The burden of celiac disease and the value of having it diagnosed
2012 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Alternativ titel[sv]
Bördan av att leva med celiaki och värdet av att bli diagnostiserad
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.

Ort, förlag, år, upplaga, sidor
Umeå: Umeå Universitet, 2012. s. 68
Serie
Umeå University medical dissertations, ISSN 0346-6612 ; 1489
Nationell ämneskategori
Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi
Forskningsämne
folkhälsa; epidemiologi
Identifikatorer
urn:nbn:se:umu:diva-54058 (URN)978-91-7459-392-1 (ISBN)
Disputation
2012-05-11, Aulan, vårdvetarhuset, Umeå, 09:00 (Svenska)
Opponent
Handledare
Tillgänglig från: 2012-04-20 Skapad: 2012-04-12 Senast uppdaterad: 2018-06-08Bibliografiskt granskad

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Norström, FredrikLindholm, LarsSandstrom, OlofNordyke, KatrinaIvarsson, Anneli

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