Knowledge of Parkinson’s Disease in a Multiethnic Urban Asian Setting

Article type: Research Article

Authors: Tan, Ai Huey^a | Tan, Chong Tin^a | Marras, Connie^b | Loh, Kwong Weng^a | Wye Ho, Niki Wai^a | Lim, Quan Hziung^a | Tan, Pei Wen^a | Lim, Chee Chean^a | Cheong, Yee Weai^a | Kong, Sik Thien^a | Schee, Jie Ping^a | Tan, Kean Hoong^a | Soo, Suet Ker^a | Vanderschaaf, Cheryl^c | Lai Heong Lew, Sara^c | Mahamad, Ummi Affah^d | Goh, Khean Jin^a | Yong, Hoi Sen^e | Lim, Shen-Yang^{a; *}

Affiliations: [a] Division of Neurology and the Mah Pooi Soo & Tan Chin Nam Centre for Parkinson’s & Related Disorders, University of Malaya, Kuala Lumpur, Malaysia | [b] Morton and Gloria Shulman Movement Disorders Centre, Toronto Western Hospital and the Edmond J. Safra Program in Parkinson’s Disease Research, University of Toronto, Toronto, ON, Canada | [c] Malaysian Parkinson’s Disease Association, Kuala Lumpur, Malaysia | [d] Department of Medicine, Faculty of Medicine, Universiti Sains Islam Malaysia, Kuala Lumpur, Malaysia | [e] Institute of Biological Sciences, University of Malaya, Kuala Lumpur, Malaysia

Correspondence: [*] Correspondence to: Professor Dr. Shen-Yang Lim, Neurology Laboratory, Level 6 (South block), University of Malaya Medical Centre, 50603 Kuala Lumpur, Malaysia. Tel.: +60 16 3518009; Fax: +60 03 79494613; E-mail: limshenyang@ymail.com

Abstract: Background:Public knowledge regarding Parkinson’s disease (PD) is important to facilitate good health-seeking behavior, but the literature on this topic is scarce. Objective:We aimed to explore the level of public knowledge regarding PD in a large multiethnic urban Asian cohort, and (as a secondary aim) in a smaller cohort of PD patients and caregivers. Methods:A Knowledge of PD Questionnaire (KPDQ) was developed and administered to members of the Malaysian general public, and to PD patients and caregivers. The KPDQ tests recognition of PD symptoms and general knowledge regarding PD. Results:1,258 members of the general public completed the KPDQ. Tremor was the most widely recognized symptom (recognized by 79.0% of respondents); however, 83.7% incorrectly believed that all PD patients experience tremor. Memory problem was the most widely recognized NMS. Overall, motor symptoms were better recognized than NMS. Common misperceptions were that there is a cure for PD (49.8%) and that PD is usually familial (41.4%). Female gender, Chinese ethnicity, tertiary education, healthcare-related work, and knowing someone with PD were independently associated with higher KPDQ scores. PD patients (n = 116) and caregivers (n = 135) demonstrated superior knowledge compared with the general public group, but one-third of them believed that PD is currently curable. Conclusions:This is the only study on public knowledge regarding PD in Asia. Important gaps in knowledge were evident, which could present a barrier to early diagnosis and appropriate treatment of PD. This highlights the need for targeted education campaigns and further research in this area.

Keywords: Parkinson’s disease, epidemiology, knowledge, awareness, education, cure, stem cells, Asia

DOI: 10.3233/JPD-150594

Journal: Journal of Parkinson's Disease, vol. 5, no. 4, pp. 865-879, 2015