Accuracy of death certificates for recording parkinsonian syndromes and associated dementia

Hanxu Shi, Carl Counsell* (Corresponding Author)

*Corresponding author for this work

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Death certification is often used to identify patients with certain diseases in epidemiologic research. There have been few studies looking at the accuracy of recording of parkinsonian diagnoses, any associated dementia and the cause of death on death certificates in people with parkinsonian conditions. This study aimed to assess this.

Data for these analyses were derived from a prospective incident cohort of degenerative/vascular parkinsonian syndromes with lifelong follow-up from Scotland, UK (the PINE study). In those who died, the available research and clinical care records were reviewed to establish the cause for each patient’s death. The sensitivity of death certificates was calculated to detect any parkinsonian diagnosis mentioned on the death certificate, the correct specific diagnosis and the presence of dementia. The causes of death were compared between clinical records and death certificates.

Two hundred and seventy-seven patients had died (180 men), mean age at diagnosis and death 76.9 years and 81.9 years respectively. 66.8% of death certificates mentioned any parkinsonian syndrome but only 49.5% had the correct diagnosis. Sensitivity was highest for Parkinson’s disease, those who had parkinsonian-related deaths, had longer disease durations and died out of hospital. Death certificates detected 51.2% of those with dementia. The commonest causes of death were pneumonia, end-stage Parkinsonism and vascular disease with moderate agreement between case-note review and death certification.

Deaths certificates often do not mention underlying Parkinsonism or associated dementia and so epidemiological studies should not rely on this as a sole method of identifying cases or studying mortality.
Original languageEnglish
Pages (from-to)140–146
Number of pages7
JournalJournal of Neurology
Early online date31 Jul 2020
Publication statusPublished - 1 Jan 2021

Bibliographical note

We thank the members of the PINE study team who have collected and entered the data and managed the database: Kate Taylor, Robert Caslake, Angus Macleod, David McGhee, Diane Swallow, Joanne Gordon, Clare Harris, Ann Hayman, Hazel Forbes, Valerie Angus, Alasdair Finlayson, David Dawson, Katie Wilde, David Ritchie, Artur Wozniak, Aileen Sylvester, Susan Mitchell, Pam Rebecca, Ann Christie, and Diane McCosh. The PINE study was funded by Parkinson’s UK, the Scottish Chief Scientist Office, NHSGrampian endowments, the BMA Doris Hillier award, RS Macdonald Trust, the BUPA Foundation and SPRING.


  • Parkinsonian disorders
  • death certificates
  • accuracy
  • sensitivity
  • dementia


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