Parkinson's disease case ascertainment in prospective cohort studies through combining multiple health information resources

PLoS One. 2020 Jul 1;15(7):e0234845. doi: 10.1371/journal.pone.0234845. eCollection 2020.

Abstract

Epidemiological evidence from prospective cohort studies on risk factors of Parkinson's disease (PD) is limited as case ascertainment is challenging due to a lack of registries and the disease course of PD. The objective of this study was to create a case ascertainment method for PD within two prospective Dutch cohorts based on multiple sources of PD information. This method was validated using clinical records from the general practitioners (GPs). Face validity of the case ascertainment was tested for three etiological factors (smoking, sex and family history of PD). In total 54825 participants were included from the cohorts AMIGO and EPIC-NL. Sources of PD information included self-reported PD, self-reported PD medication, a 9 item screening questionnaire (Tanner), electronical medical records, hospital discharge data and mortality records. Based on these sources we developed a likelihood score with 4 categories (no PD, unlikely PD, possible PD, likely PD). For the different sources of PD information and for the likelihood score we present the agreement with GP-validated cases. Risk of PD for established factors was studied by logistic regression as exact diagnose dates were not always available. Based on the algorithm, we assigned 346 participants to the likely PD category. GP validation confirmed 67% of these participants in EPIC-NL, but only 12% in AMIGO. PD was confirmed in only 3% of the participants with a possible PD classification. PD case ascertainment by mortality records (91%), EMR ICPC (82%) and self-reported information (62-69%) had the highest confirmation rates. The Tanner PD screening questionnaire had a lower agreement (18%). Risk estimates for smoking, family history and sex using all likely PD cases were comparable to the literature for EPIC-NL, but not for smoking in AMIGO. Using multiple sources of PD evidence in cohorts remains important but challenging as performance of sources varied in validity.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Cohort Studies
  • Electronic Health Records / trends
  • Female
  • Health Resources / trends
  • Humans
  • Logistic Models
  • Male
  • Middle Aged
  • Netherlands
  • Parkinson Disease / diagnosis*
  • Parkinson Disease / epidemiology*
  • Prospective Studies
  • Registries
  • Risk Factors
  • Self Report

Grants and funding

This research was funded by the Netherlands Organisation for Health Research and Development (ZonMw) within the Electromagnetic Fields and Health Research programme (grant numbers 85200001 and 85500003). The EPIC-NL study was funded by the Dutch Ministry of Health, Welfare and Sports (VWS); the Dutch ZonMw (Dutch Prevention funds); the World Cancer Research Fund (WCRF); Dutch Cancer Society (KWF); Julius Center; University Medical Center Utrecht and the National Institute for Public Health and the Environment (RIVM). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.