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Accuracy and Sensitivity of Parkinsonian Disorder Diagnoses in Two Swedish National Health Registers

Feldman, Adina L.; Johansson, Anna L. V.; Gatz, Margaret; Flensburg, Mans; Petzinger, Giselle M.; Widner, Håkan LU ; Lew, Mark F.; Pedersen, Nancy L. and Wirdefeldt, Karin (2012) In Neuroepidemiology 38(3). p.186-193
Abstract
Background: Swedish population-based national health registers are widely used data sources in epidemiological research. Register-based diagnoses of Parkinson's disease have not been validated against clinical information. Methods: Parkinson's disease (PD) and other parkinsonian disorder diagnoses were ascertained in two registers, i.e. the National Patient Register (NPR) and the Cause of Death Register (CDR). Diagnoses were validated in terms of accuracy (positive predictive value) and sensitivity against data from a population-based study of PD in 1998-2004 that screened more than 35,000 persons and identified 194 cases of parkinsonian disorders including 132 PD cases (the gold standard for the purposes of this study). Results: Accuracy... (More)
Background: Swedish population-based national health registers are widely used data sources in epidemiological research. Register-based diagnoses of Parkinson's disease have not been validated against clinical information. Methods: Parkinson's disease (PD) and other parkinsonian disorder diagnoses were ascertained in two registers, i.e. the National Patient Register (NPR) and the Cause of Death Register (CDR). Diagnoses were validated in terms of accuracy (positive predictive value) and sensitivity against data from a population-based study of PD in 1998-2004 that screened more than 35,000 persons and identified 194 cases of parkinsonian disorders including 132 PD cases (the gold standard for the purposes of this study). Results: Accuracy for any parkinsonian disorder diagnoses was 88.0% in the NPR and 94.4% in the CDR. Accuracy of PD diagnoses was 70.8% in the NPR and 66.7% in the CDR. Misclassification between differential parkinsonian diagnoses was common. The accuracy of PD diagnoses in the NPR improved to 83.0% by restricting the definition to primary diagnoses only. The sensitivity of PD diagnoses in the NPR and CDR combined was 83.1%, with a mean time to detection of 6.9 years. Conclusions: Population-based national health registers are valid data sources in epidemiological studies of PD or parkinsonian disorder etiology but are less suitable in studies of incidence or prevalence. Copyright (C) 2012 S. Karger AG, Basel (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Epidemiological methods, Parkinson disease, Parkinsonian disorders, Registries, Validation studies
in
Neuroepidemiology
volume
38
issue
3
pages
186 - 193
publisher
Karger
external identifiers
  • wos:000303989000009
  • scopus:84859113546
ISSN
1423-0208
DOI
10.1159/000336356
language
English
LU publication?
yes
id
eb0c3e76-580d-464b-8db7-41aed360bd8d (old id 2826360)
date added to LUP
2012-07-03 10:26:27
date last changed
2017-08-27 03:17:38
@article{eb0c3e76-580d-464b-8db7-41aed360bd8d,
  abstract     = {Background: Swedish population-based national health registers are widely used data sources in epidemiological research. Register-based diagnoses of Parkinson's disease have not been validated against clinical information. Methods: Parkinson's disease (PD) and other parkinsonian disorder diagnoses were ascertained in two registers, i.e. the National Patient Register (NPR) and the Cause of Death Register (CDR). Diagnoses were validated in terms of accuracy (positive predictive value) and sensitivity against data from a population-based study of PD in 1998-2004 that screened more than 35,000 persons and identified 194 cases of parkinsonian disorders including 132 PD cases (the gold standard for the purposes of this study). Results: Accuracy for any parkinsonian disorder diagnoses was 88.0% in the NPR and 94.4% in the CDR. Accuracy of PD diagnoses was 70.8% in the NPR and 66.7% in the CDR. Misclassification between differential parkinsonian diagnoses was common. The accuracy of PD diagnoses in the NPR improved to 83.0% by restricting the definition to primary diagnoses only. The sensitivity of PD diagnoses in the NPR and CDR combined was 83.1%, with a mean time to detection of 6.9 years. Conclusions: Population-based national health registers are valid data sources in epidemiological studies of PD or parkinsonian disorder etiology but are less suitable in studies of incidence or prevalence. Copyright (C) 2012 S. Karger AG, Basel},
  author       = {Feldman, Adina L. and Johansson, Anna L. V. and Gatz, Margaret and Flensburg, Mans and Petzinger, Giselle M. and Widner, Håkan and Lew, Mark F. and Pedersen, Nancy L. and Wirdefeldt, Karin},
  issn         = {1423-0208},
  keyword      = {Epidemiological methods,Parkinson disease,Parkinsonian disorders,Registries,Validation studies},
  language     = {eng},
  number       = {3},
  pages        = {186--193},
  publisher    = {Karger},
  series       = {Neuroepidemiology},
  title        = {Accuracy and Sensitivity of Parkinsonian Disorder Diagnoses in Two Swedish National Health Registers},
  url          = {http://dx.doi.org/10.1159/000336356},
  volume       = {38},
  year         = {2012},
}