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

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

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Harknett, E. C. Chang, W. Y. C. Byrnes, S. Johnson, J. Lazor, R. Cohen, M. M. Gray, B. Geiling, S. Telford, H. Tattersfield, A. E. Hubbard, R. B. Johnson, S. R.
Spatial Coverage	United States Switzerland New Zealand Canada Australia Germany
Description	Country affiliation: United kingdom Author Affiliation: Harknett EC ( Division of Therapeutics and Molecular Medicine and Respiratory Biomedical Research Unit, University of Nottingham, Nottingham, UK.)
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. CONCLUSION: 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.
File Format	HTM / HTML
ISSN	14602725
e-ISSN	14602393
Journal	QJM
Issue Number	11
Volume Number	104
Language	English
Publisher	Oxford University Press
Publisher Date	2011-11-01
Publisher Place	Great Britain (UK)
Access Restriction	Open
Subject Keyword	Discipline Medicine Lymphangioleiomyomatosis Epidemiology Registries Statistics & Numerical Data Canada Germany New Zealand Switzerland Research Support, Non-u.s. Gov't
Content Type	Text
Resource Type	Article
Subject	Medicine

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