ArticleNeurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology2020
Understanding patients' and caregivers' perspectives and educational needs in Parkinson's disease: a multi-ethnic Asian study.
Article in Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
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Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 28 citations in OpenAlex.
- Enteral Nutrition in Idiopathic Parkinson's Disease and Atypical Parkinsonism: A Systematic Review.Movement disorders clinical practice · 2026Pooled it
- The subjective experience of family caregivers of people living with Parkinson's disease: a meta-ethnography of qualitative literature.Aging clinical and experimental research · 2022Pooled it
- Real-world use and evaluation of a generative AI chatbot for Parkinson's disease information: a prospective observational study.The Lancet regional health. Europe · 2026Article
- Access, stigma and community engagement: implementation strategies for rural and underserved populations.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- A Systematic Review of Health Literacy in People Living With Parkinson's Disease.Health science reports · 2026Review
- Breaking barriers and fighting inequality in Parkinson's disease care: Personal reflections of movement disorders clinicians.Journal of Parkinson's disease · 2026Article
- Parkinson's through a cultural lens: Diversity in disease expression and care.Journal of Parkinson's disease · 2026Review
- 'It Would've Been Nice to Know About Allied Health Earlier': Insights From People With Parkinson's Disease.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Concealment of Parkinsons disease prevalence and impact on health and quality of life.Scientific reports · 2025Article
- Clinical and functional evidence for the pathogenicity of the LRRK2 p.Arg1067Gln variant.NPJ Parkinson's disease · 2025Article
- Genetic Testing for Parkinson's Disease and Movement Disorders in Less Privileged Areas: Barriers and Opportunities.Movement disorders clinical practice · 2024Article
- Ethnoracial differences for caregiving burden in Parkinson's disease.Parkinsonism & related disorders · 2024Article
- Advice to People with Parkinson's in My Clinic: Probiotics and Prebiotics.Journal of Parkinson's disease · 2024Review
- A Review on Natural Antioxidants for Their Role in the Treatment of Parkinson's Disease.Pharmaceuticals (Basel, Switzerland) · 2023Review
- Exploring Unmet Information Needs of People with Parkinson's Disease and Their Families: Focusing on Information Sharing in an Online Patient Community.International journal of environmental research and public health · 2022Article
- Management of dysphagia and gastroparesis in Parkinson's disease in real-world clinical practice - Balancing pharmacological and non-pharmacological approaches.Frontiers in aging neuroscience · 2022Review
- Shear wave elastography characteristics of upper limb muscle in rigidity-dominant Parkinson's disease.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2021Article
Corrections and comments
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Authors and funding
14 authors at 3 institutions in 1 country.
Funding
Abstract
introductionLittle is known regarding the educational needs and perspectives of people living with Parkinson's disease (PD), particularly in Asia.
objectiveTo assess knowledge and perceptions regarding PD in a large multiethnic urban Asian cohort of patients and caregivers.
methodsWe conducted a survey at a university hospital neurology clinic, using a novel Knowledge and Perception of Parkinson's Disease Questionnaire (KPPDQ).
resultsThe 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.
conclusionsImportant 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.