Use of variability in national and regional data to estimate the prevalence of lymphangioleiomyomatosis.

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Serval ID
serval:BIB_46D2C4BC04EB
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Use of variability in national and regional data to estimate the prevalence of lymphangioleiomyomatosis.
Journal
QJM
Author(s)
Harknett E.C., Chang W.Y., Byrnes S., Johnson J., Lazor R., Cohen M.M., Gray B., Geiling S., Telford H., Tattersfield A.E., Hubbard R.B., Johnson S.R.
ISSN
1460-2393 (Electronic)
ISSN-L
1460-2393
Publication state
Published
Issued date
2011
Volume
104
Number
11
Pages
971-979
Language
english
Abstract
Background: Understanding the true prevalence of lymphangioleiomyomatosis (LAM) is important in estimating disease burden and targeting specific interventions. As with all rare diseases, obtaining reliable epidemiological data is difficult and requires innovative approaches.Aim: To determine the prevalence and incidence of LAM using data from patient organizations in seven countries, and to use the extent to which the prevalence of LAM varies regionally and nationally to determine whether prevalence estimates are related to health-care provision.Methods: Numbers of women with LAM were obtained from patient groups and national databases from seven countries (n = 1001). Prevalence was calculated for regions within countries using female population figures from census data. Incidence estimates were calculated for the USA, UK and Switzerland. Regional variation in prevalence and changes in incidence over time were analysed using Poisson regression and linear regression.Results: Prevalence of LAM in the seven countries ranged from 3.4 to 7.8/million women with significant variation, both between countries and between states in the USA. This variation did not relate to the number of pulmonary specialists in the region nor the percentage of population with health insurance, but suggests a large number of patients remain undiagnosed. The incidence of LAM from 2004 to 2008 ranged from 0.23 to 0.31/million women/per year in the USA, UK and Switzerland.Conclusions: Using this method, we have found that the prevalence of LAM is higher than that previously recorded and that many patients with LAM are undiagnosed.
Pubmed
Web of science
Open Access
Yes
Create date
24/11/2011 13:03
Last modification date
25/09/2019 7:09
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