Literature DB >> 22420917

The influence of regional health care structures on delay in diagnosis of rare diseases: the case of Marfan Syndrome.

Kathrin Roll1.   

Abstract

INTRODUCTION: This study investigates the relative influence of the regional availability of health care resources (measured by physician densities, number of health care centers) on health care quality (measured by delay in diagnosis), based on data for the rare disease Marfan Syndrome.
METHODS: Administrative data from 389 patients with Marfan Syndrome were analyzed. Logistic regression models were applied for a dichotomous comparison of the dependent variable 'time to diagnosis' with the classifications 'immediate' and 'late' diagnosis. Physician densities of cardiologists/angiologists, ophthalmologists, orthopedists, and GPs, as well as distance to medical health care centers and sociodemographic information were entered into the models.
RESULTS: The results showed that the relationship between physician densities and probability of immediate diagnosis of Marfan Syndrome is negative linear, and quadratic for cardiologists/angiologists. This effect was significant with respect to density of cardiologists/angiologists (p=0.0097). Distance to medical health care centers was not a predictor of an immediate diagnosis.
CONCLUSION: Marfan Syndrome faces significant problems of quality of health care, as although the requisite quantity of health care resources is available, this does not affect delay in diagnosis. Information technology might foster valuable networking among physicians treating such cases along with holistic assessment of symptoms as they occur.
Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

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Mesh:

Year:  2012        PMID: 22420917     DOI: 10.1016/j.healthpol.2012.02.003

Source DB:  PubMed          Journal:  Health Policy        ISSN: 0168-8510            Impact factor:   2.980


  13 in total

1.  Diagnostic Process in Rare Diseases: Determinants Associated with Diagnostic Delay.

Authors:  Juan Benito-Lozano; Greta Arias-Merino; Mario Gómez-Martínez; Alba Ancochea-Díaz; Aitor Aparicio-García; Manuel Posada de la Paz; Verónica Alonso-Ferreira
Journal:  Int J Environ Res Public Health       Date:  2022-05-26       Impact factor: 4.614

2.  Spatial clusters of autism births and diagnoses point to contextual drivers of increased prevalence.

Authors:  Soumya Mazumdar; Alix Winter; Ka-Yuet Liu; Peter Bearman
Journal:  Soc Sci Med       Date:  2012-12-08       Impact factor: 4.634

Review 3.  Perspectives on the revised Ghent criteria for the diagnosis of Marfan syndrome.

Authors:  Yskert von Kodolitsch; Julie De Backer; Helke Schüler; Peter Bannas; Cyrus Behzadi; Alexander M Bernhardt; Mathias Hillebrand; Bettina Fuisting; Sara Sheikhzadeh; Meike Rybczynski; Tilo Kölbel; Klaus Püschel; Stefan Blankenberg; Peter N Robinson
Journal:  Appl Clin Genet       Date:  2015-06-16

4.  General practitioner (family physician) workforce in Australia: comparing geographic data from surveys, a mailing list and medicare.

Authors:  Soumya Mazumdar; Paul Konings; Danielle Butler; Ian Stewart McRae
Journal:  BMC Health Serv Res       Date:  2013-09-03       Impact factor: 2.655

5.  The economic impact of Marfan syndrome: a non-experimental, retrospective, population-based matched cohort study.

Authors:  Dmitrij Achelrod; Carl Rudolf Blankart; Roland Linder; Yskert von Kodolitsch; Tom Stargardt
Journal:  Orphanet J Rare Dis       Date:  2014-06-23       Impact factor: 4.123

6.  Regional differences in health care of patients with inflammatory bowel disease in Germany.

Authors:  Ansgar Lange; Anne Prenzler; Oliver Bachmann; Roland Linder; Sarah Neubauer; Jan Zeidler; Michael P Manns; J-Matthias von der Schulenburg
Journal:  Health Econ Rev       Date:  2015-10-16

7.  The structure of the pharmaceutical market in Iran using concentration indices.

Authors:  Mohammad Mohseni; Hasan Abolghasem Gorji; Bahman Ahadinezhad; Omid Khosravizadeh; Meysam Safi Keykaleh; Ahmad Moosavi; Bahareh Mohtashamzadeh
Journal:  Electron Physician       Date:  2017-04-25

8.  Routinely collected health data to study inherited heart disease: a systematic review (2000-2016).

Authors:  Bianca Blanch; Joanna Sweeting; Christopher Semsarian; Jodie Ingles
Journal:  Open Heart       Date:  2017-10-11

9.  A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region's rare diseases registry.

Authors:  Monica Mazzucato; Laura Visonà Dalla Pozza; Silvia Manea; Cinzia Minichiello; Paola Facchin
Journal:  Orphanet J Rare Dis       Date:  2014-03-19       Impact factor: 4.123

10.  The health and life path of rare disease patients: results of the 2015 French barometer.

Authors:  Thomas Heuyer; Sonia Pavan; Christine Vicard
Journal:  Patient Relat Outcome Meas       Date:  2017-09-13
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