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

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.

INTRODUCTION

Health literacy is fundamental to patient engagement in the healthcare process, and has important consequences on health outcomes [1]. Previous research showed that delayed treatment of Parkinson’s disease (PD) may be associated with worse patient outcomes, perhaps because functional decline may be difficult to reverse once patients have become sedentary or disabled from the accumulation of motor problems [2, 3]. Early recognition of PD may be hampered by the fact that symptoms such as slowness of movements, difficulty walking and tremor can be misattributed to other causes including “ageing” or musculoskeletal disorders. The non-motor symptoms (NMS) of PD are even less well recognized [4, 5]. Furthermore, a belief that little can be done for such problems can also discourage people from seeking assessment and treatment. Recent studies from North America, Europe and Asia highlighted significant issues with access to reliable PD-related information [6–8]. Thus, the Global Declaration on PD by the World Health Organization lists efforts to “increase public awareness of PD as a priority health challenge”.

Although gaps in PD knowledge have been studied among medical professionals [9], to our knowledge there are no published studies from Asia (which accounts for >40% of the global PD burden) on knowledge and attitudes towards PD among the general public [10, 11]. One online survey conducted among more than 5,000 members of the European general public by the European PD Association (EPDA) was interpreted by the Association as revealing a “shocking  …   general lack of understanding of the disease” [11]. Similarly, few studies have evaluated knowledge regarding PD in patients and caregivers [8, 13]. One small study from Singapore reported that 85.3% of patients “had no knowledge” of the disease, although it is not clear how this evaluation was made [13]. Few research tools have also been developed in this area, and the questionnaires that have been used to gauge PD knowledge have significant limitations, including ambiguous wording of questions and the inclusion of content that is contentious even among PD experts [10, 11, 10, 11].

Improved understanding of these issues will facilitate the development of more informed educational programs about the nature of PD and its treatments. We therefore aimed to explore the level of public knowledge regarding PD in a large multiethnic urban Asian cohort. A secondary aim was to assess the level of knowledge in a smaller cohort of PD patients and caregivers. To do this, we devised and administered a novel Knowledge of PD Questionnaire (KPDQ).

MATERIALS AND METHODS

The Knowledge of Parkinson’s Disease Questionnaire (KPDQ)

The KPDQ was developed by neurologists with expertise in PD, epidemiology and questionnaire design (Supplementary Materials, Appendix e-1).Chinese and Malay-language versions were translated by multilingual clinicians familiar with PD (Supplementary Materials, Appendices e-2 and e-3). Part 1 of the KPDQ tests recognition of PD symptoms (4 motor, 10 NMS), and respondents are instructed to tick a box for “problems experienced by people with PD”. For Part 2, respondents are asked to provide a True or False answer for ten statements testing general knowledge regarding PD. Only issues considered to be of practical significance are tested and various aspects of PD are covered including diagnosis (Part 1; and Part 2 Statements 1 and 4), etiology (Statements 2 and 3), epidemiology (5–7), treatment (8 and 9), and psychosocial impact (10). Other sources for question selection included recent reviews on PD [4, 14] and a PD information booklet published by the Malaysian PD Association (MPDA) [15]. User review was sought from patients, caregivers, members of the Malaysian PD Association, and lay members of the public. Items deemed unsuitable were amended or dropped; the questionnaire went through five revisions.

Subjects

The KPDQ was administered to adults attending a health fair in Kuala Lumpur, Malaysia, in April 2013. Participants had to be ≥18 years old and able to complete the survey reliably as judged by trained research assistants. As a secondary objective, the questionnaire was also administered to a smaller convenience sample of non-demented PD patients and caregivers attending the University of Malaya Medical Centre (UMMC) Neurology Clinic during this period. Demographic data of the respondents were collected. Questionnaire forms were returned anonymously. The study was approved by the UMMC Ethics Committee and verbal consent was obtained from all participants, as stipulated by the Ethics Committee (verbal consent was deemed sufficient, as the questionnaire was very brief, was intended to be completed anonymously to protect participant privacy, and posed no other potential downside or harm to the participants).

Statistical analyses

Group differences in demographics and questionnaire responses were analyzed using the Chi Square test and analysis of variance (ANOVA). Multivariate analysis of variance (MANOVA) was used to examine between-group demographic differences in the general public cohort with regards to questionnaire performance, followed by ANOVA and post hoc Tukey to identify where the significant differences lay within the different variables. Preliminary assumption testing was conducted to check for normality, linearity, univariate and multivariate outliers, homogeneity of variance-covariance matrices, and multicollinearity, with no serious violations noted. P <  0.05 was the cut-off for significance, unless otherwise specified.

RESULTS

The KPDQ was administered to 1,285 members of the general public, of which 1,258 questionnaires (97.9%) were included in the analysis (the commonest reason for exclusion was respondent age <18 years and incomplete forms). One hundred and sixteen PD patients and 135 caregivers were approached and all consented and completed the KPDQ. Subject demographics are summarized in Table 1. The KPDQ took about 10 minutes to complete and was easily understood and well accepted. The rates of PD symptom recognition are shown in Fig. 1

General public cohort

Among the general public, tremor was the most widely recognized symptom (79.0%) while memory problem was the most widely recognized NMS (51.8%) (Fig. 1). Overall, motor symptoms were significantly better recognized (range 47.0–79.0% , mean 2.5 of 4 symptoms) compared to NMS (range 9.4–51.8% , mean 2.2 of 10 symptoms, P <  0.001) (Table 2). The results for Part 2 of the KPDQ are shown in Table 3. The three most common misperceptions concerned Statements 4 (all patients with PD experience tremor; 83.7%), 8 (there is a cure for PD; 49.8%) and 7 (PD is usually familial; 41.4%).

In multivariate analysis (MANOVA, Supplementary Table), being in healthcare-related work and knowing someone with PD were significantly associated with higher mean scores in all knowledge assessments (recognition of motor symptoms, NMS, and total symptoms, and the number of Part 2 questions answered correctly, P values ranging from <0.001 to 0.011). Females demonstrated superior knowledge compared to males in all the categories, with significant differences for motor symptoms (P <  0.004) and total symptoms recognition (P <  0.013). Significant between-group differences were also found for age group with respect to motor symptoms recognition (P = 0.014); for race with respect to NMS (P = 0.001) and total symptoms (P = 0.005) recognition, as well as the number of Part 2 questions answered correctly (P <  0.001); and for level of education with respect to motor symptoms recognition (P = 0.001) and Part 2 (P <  0.001).

These results were further analyzed using univariate analysis (ANOVA) and post hoc Tukey to identify where the significant differences lay within the demographic variables (age, race, etc.). On univariate analysis, although age group 51–65 had the highest mean score in motor symptoms recognition, comparison with each of the other age groups separately did not reveal significant differences. With regards to race, there were significant differences between the Chinese and Malay groups with respect to recognition of NMS (2.37 vs. 1.79, P <  0.001); total symptoms (4.91 vs. 4.29, P <  0.01) and Part 2 (7.01 vs. 6.36, P <  0.001); and between the Chinese and Indian groups with respect to Part 2 (7.01 vs. 6.59, P <  0.009). Comparing the education-level groups separately, significant differences were seen between tertiary-educated and secondary-educated respondents for motor symptoms recognition (2.60 vs. 2.30, P = 0.001) and Part 2 (6.89 vs. 6.53, P <  0.001).

Patient and caregiver cohort

PD patients were significantly older than caregivers, who in turn were significantly older than the general public sample, on post hoc analysis (corresponding to lower rates of higher education). Nevertheless, the proportions of patients and caregivers who were able to correctly identify PD symptoms were higher compared to the general public, with significant between-group differences seen for nearly all PD symptoms except for tremor, memory problem and reduced sense of smell (Fig. 1). For example, 52.6% of patients and 48.1% of caregivers were able to identify constipation as a PD symptom compared to only 9.4% of the general public. Compared with the general public, both patients and caregivers had higher mean scores for motor symptoms, non-motor symptoms and total symptoms recognition, with highly significant P values on both ANOVA and post hoc testing(Table 2).

Compared with the general public, both PD patients and caregivers were also found to have higher rates of correct responses for all Part 2 questions, except for Statements 2 and 5, for which the correct response rate was slightly (but non-significantly) higher in the general public group compared with the caregiver group (Table 3). These differences were significant for Statements 4, 7, 8 and 10.

DISCUSSION

To the best of our knowledge, there are no published studies from Asia on the level of knowledge regarding PD in the general population. The literature on this topic is limited to only two studies from Europe and Australia [10, 11]. In the present study, we administered a novel questionnaire to a large (n = 1,258) multiethnic general public cohort in urban Malaysia and found that, overall, subjects were reasonably well-informed (for example, three-quarters of respondents recognized tremor and slowness of movement as PD symptoms). However, misperceptions were common, particularly with regard to tremor as a “universal” feature of PD (83.7% of respondents). Furthermore, 49.8% of subjects responded that PD is curable with current treatments, and 41.4% believed that PD is usually familial. Understandably, motor symptoms, which remain the defining features of PD, were better recognized than NMS. In comparison to motor symptoms, the connection between NMS and PD was also less frequently recognized by PD patients and caregivers. As expected (and in spite of having lower levels of education attainment, corresponding to their older age), patients and caregivers demonstrated superior knowledge compared with the public group. Surprisingly, however, one-third of patients and caregivers believed that PD is currently curable.

The misperception surrounding “cures” contrasts with findings from Australia, where only 15% of respondents thought that there was a cure for PD [10]. This may be due, for example, to the widespread use of “stem cell” procedures which are performed without proper regulatory controls and which often claim to produce dramatic results [16]. It could also arise from a belief in complementary treatments [17], which are widely practiced in Asia and other developing countries [18–20]. This misperception would be an important one to target from a public education perspective, since it could lead to inappropriate healthcare-seeking behaviors. An erroneous belief that PD is familial may possibly also result in stigmatization of patients and family members [21], but this issue has not been investigated specifically in PD. On the other hand, “young persons’ diseases” often receive more public sympathy and research dollars [10], hence, the recognition by almost 80% of our general public respondents that PD can also affect young adults (exemplified by high-profile cases such as Michael J. Fox) could perhaps be construed in a positive light.

Our observation that tremor was the best recognized symptom of PD (as also found in the study commissioned by the EPDA) is unsurprising, since tremor is present in about 80% of PD patients [14, 22] and is often a highly visible manifestation of the disease. In line with this, one recent study reported that presentation with tremor (vs. gait disturbance) was associated with a shorter time to PD diagnosis [23]. However, it is important to recognize that other motor features of PD (particularly bradykinesia and axial motor impairments) progress more rapidly and are typically the main cause of motor disability in patients with PD [24, 25]. The NMS of PD have been under-recognized and patients presenting with NMS take longer to be diagnosed [26], in part because NMS may be non-specific and misattributed to normal ageing or comorbidities such as depression, osteoarthritis, diabetes, and prostatic hypertrophy. Indeed, studies show that many NMS occur with a fairly high frequency in non-PD elderly controls; even so, NMS occur significantly more commonly and with greater severity in PD patients compared to controls [27, 28].

In our study, female gender, Chinese ethnicity, tertiary education, healthcare-related work, and knowing someone with PD were independently associated with higher scores on the KPDQ. One study investigating the determinants of delayed diagnosis in PD showed that male gender was associated with delayed presentation, which the authors postulated could be due to poor knowledge about health-related matters [23]. One possible explanation for the lower level of PD awareness in our Malay subgroup could be that PD may be less prevalent in this racial group [29], although this finding has not been confirmed by other investigators [30]. There are very few studies concerning health literacy among the Malaysian general public; previous studies including one conducted among students attending a Malaysian university found relatively high levels of awareness and knowledge of epilepsy [31, 32]. Importantly, the observed socio-demographic differences may be due to varying levels of health literacy and access to PD-related information, and to differences in values and attitudes. The observation of ethnic and international differences suggests that further population-specific research is needed to inform educational efforts.

We devised a novel self-completed questionnaire to assess knowledge levels regarding PD, since we could find no suitable instruments for this purpose in the literature. The high rate of completion indicates that the KPDQ was acceptable to respondents across a broad demographic. From the results obtained in this large sample, the KPDQ appears to have face validity, with (1) PD patients having the highest scores, followed by caregivers and the general public, and (2) the observed pattern of predictors of correct responses in the general public cohort. Of the questionnaires that have been used previously, the wording was sometimes ambiguous; for example, the question on whether PD causes an “inability to move” (regarded as true by the study authors) [11], since the actual problem is usually one of slowness or difficulty in initiation, rather than a true paralysis. Issues of contention were also tested, for example the statement that PD “significantly shortens the lifespan” (regarded as false by the study authors) [10] is supported by a number of studies, including a recently published systematic review by Macleod et al. that found a pooled mortality ratio of 1.4 in PD patients [33]. To make reliable comparisons between different cultural groups and countries, consistent data collection procedures are needed, and the KPDQ, which is simple to administer and easily translated into non-English languages, can be useful for this purpose.

What can be done to improve awareness and knowledge regarding PD? The findings of this study suggest that educational programs should include the following information: (1) rest tremor is typical, but its presence is neither sufficient nor necessary to diagnose PD; (2) various NMS are common in PD (and these should be elucidated); (3) effective treatments exist for motor and NMS, but there is currently no cure for PD; and (4) PD is usually sporadic rather than familial. In this respect, trusted and influential professional bodies and lay/advocacy organizations such as the International Parkinson and Movement Disorder Society (MDS), the National Parkinson Foundation and the Michael J. Fox Foundation, can play an important role, for example by providing a clearly-worded factsheet on PD via their websites that is updated (and seen to be updated) regularly. PD-related health messages need to be disseminated across different languages and cultures, and tailored according to the different interests, values, and health literacy levels of specific groups. Since knowing someone with PD independently predicted better knowledge of the condition in our study, it is possible that “personalized” messages, e.g., in the form of videotaped testimonials from patients may be an effective means of conveying some ofthis information.

The main limitation of this study is that the higher-than-average level of education in our general public cohort is likely to overestimate PD knowledge in the general population. Moreover, recruitment of participants from a health fair may also tend to capture a group more knowledgeable than average about health issues. The general public, caregiver and patient groups were not well-matched in terms of age, gender, ethnicity, education and occupation; although the possibility of bias exists, the results obtained would argue against this, since despite having higher levels of education, the general public group scored more poorly compared to the PD patients and caregivers. The use of close-ended questions with fixed response options (as opposed to open-ended questions) may have also resulted in higher estimates of PD knowledge. It is possible that some respondents may have over-responded if they reached the conclusion that all symptoms in Part 1 (symptom checklist) were probably correct. However, only 28 out of a total of 1,509 (1.86%) respondents answered in the affirmative to all 14 symptoms; and only 24 (1.59%) respondents identified 13 symptoms and 21 (1.39%) respondents identified 12 symptoms; thus, it would not appear that respondents over-responded. We did not include an item on speech and communication difficulties, which we would recommend adding to Part 1 of the KPDQ. Finally, the questionnaires were completed anonymously and we were thus unable to correlate disease features of patients with their questionnaire responses. In future studies, the KPDQ should be tested in other cohorts (e.g., general public subjects with lower educational attainment or from rural communities; and PD patients from the general community as opposed to those attending a University neurology clinic, where patient education may be more effective), and should include more evidence for the validity of different translatedversions.

In conclusion, there need to be further efforts aimed at raising awareness and providing accurate information regarding PD, especially targeting groups with poorer knowledge. This may facilitate earlier diagnosis and treatment, reduce stigma, provide an increased sense of self-empowerment to people living with PD, and help to protect them from seeking ineffective or even potentially hazardous, and costly, treatments.

CONFLICT OF INTEREST STATEMENT

There are no conflicts of interest.

STUDY FUNDING

Malaysian Ministry of Higher Education grant for High-Impact Research (HIR) UM.0000017/HIR.C3.