Objective: To collect real-life data from a large cohort with Parkinson’s disease (PD), with particular emphasis on drug regimens, motor complications, and quality of life (QoL) measures in pateints of all ages and disease durations from an homogenous population attending a small number of academic units. This will serve as useful baseline data in an aging population and evaluate our success in managing motor disability in PD. In addition, we aimed to compare responses across groups of different ages and disease durations.

Background: In Ireland a small number of neurologists and geriatricians manage the majority of people with PD. There is no limitation to prescription of any agent or advanced treatment modality. With colleagues and two PD support groups we asked people with PD to complete a very comprehensive postal survey to evaluate treatment responses, disability, motor and non-motor features with an emphasis on motor complications.

Methods: Over 2500 anonymous surveys were distributed in clinics, by post and at PD meetings nationwide. We report observational descriptive data and compare groups using non-parametric statistics.

Results: We received results from 1000 patients (56.46% males). 12% were >80 years of age, 12% were <55 years, 39% were 65-74 years old. 11.8% were working full or part time, 22.2% were unable to work or retired early due to PD. 32% had PD of <5 years duration, 40% 5-10 years and 12.7% >15 years duration. 98% were on treatment; 25% were on levodopa 5 times or more daily and 6% were receiving infusional therapy or DBS. 19% had an interdose interval of 3 hours or less. Notably, 72% reported no or <1hr of dyskinesia daily. 27% endorsed at least one form of formal impulse control disorder feature. 39% reported a fall within the previous month and 32% had been admitted to hospital within the previous year. 38.7% have never felt disabled by PD, where 21.6% felt disabled for more than 5 hours/day; being unable to perform routine activities. Group comparisons and QoL data will be reported.

Conclusions: To date this is the largest single-country ‘real-life’ patient survey in Europe looking at motor complications in PD with comprehensive data on motor control, disability and QoL in patients. We have data from a patient group representing approximately 13% of the estimated PD population of 8000 in Ireland which is an adequate representative sample.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/treating-parkinsons-2015-a-nationwide-survey-of-treatment-responses-and-complications-in-1000-irish-patients-with-parkinsons-disease/