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Cause of death in a Lothian population with Parkinson’s disease: Relating it to length and stage of disease and co-morbidities
Safe People
Organisation name
NHS Lothian
Applicant name(s)
Conor Maguire
Funders/ Sponsors
N/A
Safe Projects
Project ID
DL-2021-043
Lay summary
Five people are diagnosed with Parkinson’s in Lothian each week, with 2,500 people living with the condition. There are four recognised stages of the condition: Diagnostic, maintenance, complex and palliative, with the latter stage lasting up to 2.2 years. As the disease progresses, the medications for it become less effective, and non-movement manifestations of the condition (continence issues / psychiatric changes / dementia) become more prevalent. In the later stages, standard medication for Parkinson’s becomes less effective and may be reduced or withdrawn. We kept a record of all people with Parkinson’s in Lothian dying since 2019, and wish to examine the cause(s) of death from the death certificates, and correlate these with the stage and duration of the disease. By doing so, we aim to better identify the trajectory of illness and how best, and when, to intervene to ensure that the palliative stage of the disease is optimised for the patient.
Public benefit statement
Parkinson’s (PD) is the second most common neuro-degenerative condition with an average age at onset of 70 years. There are around 2,500 people with Parkinson’s (PWP) in Lothian. A Lothian team oversees the care of all PWP throughout their illness. We have a record of each person, with a coded diagnosis of Parkinson’s, attending the Lothian services who has died since the end of 2019. The aim of this project is to assess the cause of death of PWP in Lothian, and to correlate it with the stage of the illness, and mitigating factors in the final illness. Previous population studies have suggested that people with Parkinson’s have a higher risk of mortality to a matched population, but that important co-morbidities (e.g. dementia) are often omitted from certification. Gaining such information will assist clinicians in better understanding the service provided by the Lothian team by identifying the trajectory of the disease, such as when advance care planning, including palliative care, can be instigated.
Request category type
Efficacy & Mechanism Evaluation
Other approval committees
Latest approval date
15/04/2024
Safe Data
Dataset(s) name
Researcher-sourced data
Data sensitivity level
De-Personalised
Safe Setting
Access type
TRE