Abstract
Introduction
Little is known regarding the educational needs and perspectives of people living with Parkinson’s disease (PD), particularly in Asia.
Objective
To assess knowledge and perceptions regarding PD in a large multiethnic urban Asian cohort of patients and caregivers.
Methods
We conducted a survey at a university hospital neurology clinic, using a novel Knowledge and Perception of Parkinson’s Disease Questionnaire (KPPDQ).
Results
The KPPDQ had satisfactory psychometric properties among patients and caregivers. Five hundred subjects were recruited with a 97% response rate (211 patients, 273 caregivers). Non-motor symptoms such as urinary problems, visual hallucinations and pain were relatively poorly recognized. Many (≈ 50–80%) respondents incorrectly believed that all PD patients experience tremor, that PD is usually familial, and that there is a cure for PD. About one-half perceived PD to be caused by something the patient had done in the past, and that PD medications were likely to cause internal organ damage. Issues of stigma/shame were relevant to one-third of patients, and 70% of patients perceived themselves to be a burden to others. Two-thirds of participants felt that PD imposed a heavy financial toll. Participants were about equally divided as to whether they would consider treatment with deep brain stimulation, tube feeding or invasive ventilation. Over three-quarters of patients expressed a preference to die at home.
Conclusions
Important knowledge gaps, misperceptions and perspectives on PD were identified, highlighting the need for further efforts to raise awareness and provide accurate information regarding PD, and to address patient’s and caregivers’ needs and preferences.
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Acknowledgements
We would like to thank Drs. Kwang Hwee Goh, Thien Thien Lim, Kenny Tan, Phaik Yee Ooi and Chiun Hian Chai for their helpful appraisal and suggestions to improve the KPPDQ.
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This work was supported by the University of Malaya Parkinson’s Disease and Movement Disorder Research Program (PV035-2017), and a donation from the family and friends of the late Mr. Rodney Cooke. These funding sources had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report and in the decision to submit the article for publication.
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SYL reports lecturing honoraria from Lundbeck, Medtronic, Novartis, and UCB; and consultation fees from Lundbeck. AHT reportslecturing honoraria from Novartis and Boehringer Ingelheim. The other authors have no conflicts of interest.
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The study was approved by the Medical Research Ethics Committee, University of Malaya Medical Centre (ID number 2018723-6507) and conducted ethically in accordance with the World Medical Association Declaration of Helsinki. Written informed consent was obtained from all subjects.
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Choo, X.Y., Lim, SY., Chinna, K. et al. Understanding patients’ and caregivers’ perspectives and educational needs in Parkinson’s disease: a multi-ethnic Asian study. Neurol Sci 41, 2831–2842 (2020). https://doi.org/10.1007/s10072-020-04396-4
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DOI: https://doi.org/10.1007/s10072-020-04396-4