Objective: To evaluate the clinical demographic data in Parkinson’s disease (PD) survivors with 20 years duration and beyond (PD-20) and investigate the impact of age at onset and disease duration on the clinical picture

Background: The clinical features of PD-20 are not well characterized because of a limitation of studies reporting this subgroup of PD patients.

Method: We conducted a retrospective and longitudinal study in a single Movement Disorders Clinic in Taiwan. All PD patients included in this study must be both disease duration and duration of following-up in the Clinic with 20 years or more. Demographics, clinical features and medication data were obtained for their special charts.

Results: There were 20 PD-20 subjects identified in this study (55% women) representing 3.5% (20/565) of all registered PD patients in the Clinic. Subjects were mean age 71.95 years, mean age at PD onset (AAO) was 49.90 years and mean duration of PD (DPD)  was 22.05 years. There were 8 subjects expired (40%; 74.75 years of mean age, 52.63 years of mean AAO and 22.13 years of DPD) and 12 subjects alive (60%; 70.08 years of mean age, 48.08 years of mean AAO and 22.10 years of mean DPD). The majority (90%) had 20-25 years of PD duration, the longest duration being 31 years. Fourteen subjects (70%) had resting tremor as their initial presentation of PD and another 6 subjects had akinetic-rigidity. There were median Hoehn and Yahr stage 4 and 70% were comorbid dementia an mean duration of 22 years followed-up. Eighty percent of PD-20 subjects had motor fluctuations and 55% had dyskinesia. There were a lot of non-motor symptoms presenting in PD-20 subjects including constipation (95%), depression/anxiety 90%, insomnia (85%), dementia (80%), orthostatic hypotension (75%), freezing (65%), falls (55%), hallucination/delusion (50%), REM-sleep behavior disorder (50%).. etc. The majority (75%) were living at home and required a caregiver.

Conclusion: We concluded that PD-20 subjects should be an elite subgroup of patients with early-onset disease, which is associated with a more benign course. The age at onset and initial presenting symptom are the main predictors of developing a long-term PD survivors. Interventions for caregivers of PD may reduce their psychological burden and improve quality of living activity of patient.

References: 1. Cilia R, Cereda E, Klersy C, Canesi M, Zecchinelli M, Mariani CB, et al. Parkinson’s disease beyond 20 years. J Neurol Neurosurg Psychiatry 2015;86:849–855. 2. Hassana A, Wu SS, Schmidt P, Simuni T, Giladi N, Miyasak JM, et al. The profile of long-term Parkinson’s disease survivors with 20 years of disease duration and beyond. J Parkinson Dis 2015;5 313–319

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-clinical-features-of-parkinsons-disease-with-20-years-or-more-survival/