This is a well conducted study and there are surprisingly few of these high-quality incident PD cohorts in the world... the survival times are worryingly low at first glance and much shorter than we tend to quote. The authors draw attention to this but much of it will be driven by age. The average age in the incident cases is pretty high at 75 years old... the average age of diagnosis of PD is usually quoted as 65 years old. Playing devils advocate, for PD at least, the average survival of 6 years means that patients tend to die around the normal UK life expectancy mark (late 70's, early 80's)...
The other thing that varies tremendously is access to high quality care around the UK... the Parkinson's UK Excellence Network is trying to achieve equal care for all...
Parkinsonism Relat Disord. 2016 Aug 12. pii: S1353-8020(16)30307-8. doi: 10.1016/j.parkreldis.2016.08.010. [Epub ahead of print]
Fielding S, Macleod AD, Counsell CE.
BACKGROUND:
The best data on prognosis comes from population-based incident cohorts but few such cohorts exist for Parkinson's disease and atypical parkinsonism.
METHODS:
The PINE study is a prospective follow-up study of an incident cohort of people with degenerative or vascular parkinsonism and age-sex matched controls. Participants have annual follow-up from diagnosis until death with review of primary/secondary care records and linkage to the UK death register. Data are collected on survival, disability (dependency on others for activities of daily living) and institutionalization. Research criteria are used to guide the clinical diagnosis, which is updated annually. We compared all-cause mortality, disability and institutionalization in patients (subdivided by diagnosis) and controls, adjusted for important confounders.
RESULTS:
323 incident parkinsonian patients (199 Parkinson's disease, 124 atypical parkinsonism, mean age at diagnosis 75yrs) and 262 controls (mean age 75yrs) had 1349 and 1334 person-years follow-up respectively (maximum follow-up 10 years). All outcomes were worse in parkinsonian patients than controls, especially in atypical parkinsonism (adjusted mortality hazards ratios Parkinson's disease 2.49, 95%CI 1.72-3.58, atypical parkinsonism, 6.85, 95%CI 4.78-9.81). Median survival times for Parkinson's disease and atypical parkinsonism were 7.8 and 2.7 years respectively but were very age-dependent. At three years the rates of death or dependency were controls 21%, Parkinson's disease 46%, atypical parkinsonism 96% whilst overall institutionalization rates were 5%, 15% and 55% respectively.
CONCLUSION:
The prognosis of Parkinson's disease and atypical parkinsonism in this unselected incident cohort was significantly worse than previously reported. This has important implications for patient management.
Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.
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