Abstract

1. Introduction

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), a novel virus causing COVID-19 infection, has led to a deadly pandemic. This virus has poorer outcomes and higher mortality rates in older adults and those with comorbidities or chronic diseases such as Parkinson’s disease [1,2,3]. SARS-CoV-2 appeared in early December 2019 in the city of Wuhan, Hubei, China. Since then, local and national governments have taken unprecedented measures in response to the outbreak of SARS-CoV-2-induced coronavirus disease in 2019 (COVID-19), including quarantining infected individuals and their family members, canceling public transportation, exit controls, travel restrictions, contact restrictions, curfews, school closures, and requiring people to wear mouth and nose masks [4,5]. These measures may have several short-term as well as long-term adverse consequences for people with Parkinson´s disease, such as worsening of motor function and stress-related psychiatric symptoms such as anxiety and depressive mood [3]. However, for successful containment of the spread of the virus, it is essential that people with Parkinson´s disease follow the measures. Three factors, among others, are decisive for adherence to these measures: the knowledge of the population, their attitudes, and practical implementation of the recommendations [6]. The lessons learned from the SARS outbreak in 2003 suggest that knowledge and attitudes toward infectious diseases influence the degree of emotional response in the population. Above all, panic can further complicate attempts to prevent the spread of the disease [7]. In order to facilitate the management of the COVID-19 outbreak there is an urgent need to understand public awareness of COVID-19 and the reasons for nonadherence to measures at this critical moment. Perception of risks is important for human decision making. Regarding behavior, emotions such as fear or the feeling of being threatened also play a role. So far, one study has investigated the knowledge, attitudes, and practices (KAP) of Chinese people with respect to COVID-19 [8]. In that study, the majority of the mostly female and well-educated respondents was well informed about COVID-19 and followed the guidelines. However, their average age was 33.0 years, and the results are not transferable to people with Parkinson´s disease. A recent study using telephone interviews of 100 people with Parkinson´s disease suggested that most patients and caregivers were well informed and were coping well with the pandemic [9]. However, multiple-choice or dichotomous questions such as those in the recent study by Prasad et al. cannot adequately reflect KAP [9]. Moreover, one cannot make valid conclusions about the true rates of adherence to preventive measures, and one has to take into account the sociodemographic circumstances of the patients. For this purpose, qualitative methods are necessary. There are no comprehensive data on KAP about COVID-19 in patients with Parkinson´s disease. Describing KAP about COVID-19 in patients with Parkinson´s disease may help to improve adherence to preventive measures.

2. Materials and Methods

3. Results

3.2. Knowledge

Most patients reported that they were well or sufficiently informed about COVID-19. Thirty-two (32.3%) reported that they were very well informed, 38 (38.4%) that they were well informed, 16 (16.2%) that they were sufficiently informed, and 5 (5.1%) that they were poorly informed (3 missing). Of note, five patients (5.1%) reported that they received too much information about the virus. Most subjects (patients with Parkinson’s disease and controls) (94.9%) received their information from television news (Figure 1).

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Figure 1

Actively reported sources of information (%). Active reporting means that patients were not given a choice of answers but were free to choose their own.

Almost half of the patients (47.5%) actively sought additional information on the coronavirus pandemic, mainly via the internet or through acquaintances in the medical profession. Among patients not seeking additional information, 23 patients (46.0%) reported that they already had enough information, 12 (24.0%) that they did not have the ability to obtain additional information (e.g., no internet access), and 7 (14%) that they were not interested. Ten percent of patients stated that they did not want to get carried away by too much information. Seventy-seven patients (77.8%) reported that they knew about the Robert Koch Institute; however, only 66 patients (66.7%) could describe its function correctly.

3.4. Practices

Almost two thirds of the patients (61.6%) were recommended to stay at home more often by their family members. Seventy-two patients (72.7%) reported that they had changed their behavior since the appearance of the virus; only 4.0% reported taking no measures to protect themselves. The most common actively reported preventive behaviors are shown in Figure 2. Active reporting means that patients were not given a choice of answers but were free to choose their own.

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Figure 2

Actively reported preventive measures in response to COVID-19 (%).

Others include increased use of disinfectants (1), separation of towels (1), avoid public transport (1), and additional vaccination (1). Active reporting means that patients were not given a choice of answers but were free to choose their own.

When asked “Have you reduced social contacts?”, 86.9% of patients stated that they had reduced their contacts with relatives and friends and stayed at home more. Among patients who had not reduced their contacts, most stated that they had only a few contacts already and/or that they had to stay home anyway, mostly due to their Parkinson’s disease.

When asked about contacts with their relatives and friends, 77 patients (77.8%) reported that they had contact with their families at least several times a week, and 40 patients (40.4%) reported that they had a similar amount of contact with their friends. Thirty-nine patients (39.4%) saw their family members face-to-face, 42 (42.4%) only talked to them by telephone, and 16 (16.2%) used more up-to-date means of communication, such as video telephony and smartphone messenger services. The majority of patients (61.6%) kept in touch with friends by telephone.

Among the 73 patients with grandchildren (73.7%), 61 patients (83.6%) did not have contact with their grandchildren at present (including 8 who did not have contact with them before the coronavirus). The discontinuation of contact was mainly proposed by the parents of the grandchildren, the patients themselves, or both (86.8%). Thirty-six (73.6%) of those who did not have contact with their grandchildren stated that they suffered from this.

4. Discussion

In this study, the KAP of patients with and without Parkinson’s disease was analyzed by means of semi-structured telephone interviews to estimate the extent of nonadherence to preventive measures.

The majority of patients with Parkinson’s disease understood the containment measures in the context of the coronavirus pandemic and felt sufficiently informed. Most patients informed themselves via television news, which is in line with the study by Prasad et al. [9]. In addition, younger patients tended to inform themselves via the internet, and older patients got their information from the radio or from family members. A closer analysis shows, however, that only about 30% of patients could name the correct function of the Robert Koch Institute, although it had been present daily in the most diverse media since the outbreak of the coronavirus pandemic in Germany. Moreover, 30% of patients could not explain why specific measures (such as frequent handwashing) were necessary. We therefore conclude that about 30% of the patients had an insufficient level of knowledge, although all patients indicated that they obtained information from various media. A low level of knowledge was not associated with a lower educational level, cognitive disorders, or depression.

With regard to attitudes, the picture is more homogeneous. Almost all patients stated that they considered the virus to be dangerous and that the preventive measures were reasonable. However, this attitude did not seem to be transformed into corresponding adherent behavior. On the basis of the simple yes/no questions (e.g., “Have you reduced contact?”, “Have you changed your behavior?”), the majority of patients seemed to be adherent and to adhere to the instructions. This was also the case in the recent study by Prasad et al. [9] in which all patients reported following “any preventive measure” against COVID-19 and all patients reported performing social distancing. However, if one adds the qualitative questions, as in our study, the reported high level of adherence is put into perspective. Although almost all of our patients claimed to have reduced contact, a closer analysis of the qualitative answers shows that a considerable proportion of the patients continued to meet relatives in person almost daily. This shows that the use of a simple dichotomous question (“Have you reduced social contact?”) overestimates adherence to this preventive measure. Such simply structured queries are rather unsuitable for patients with Parkinson’s disease. On the other hand, it is alarming that 27% of patients did not adhere to the important preventive measure of contact reduction. In general, patients with good drug adherence (according to the SAMS) also seemed to practise more preventive measures (e.g., handwashing, mouth and nose protection) than did nonadherent patients. However, adherence to the measure of contact reduction was also related to knowledge. Patients who did not reduce personal contact with relatives had significantly less knowledge. On the other hand, there were also patients who did not reduce social contact against their better knowledge. This means that both intentional and unintentional nonadherence play a role.

In terms of burden, anxiety and worries about the current situation were reported by 58.6% of patients, consisting of fear of becoming infected as well as worries about future economic and social development. In the study by Prasad et al., only 11% of patients reported worsening of Parkinson’s disease symptoms following the onset of the COVID-19 pandemic [9]. In contrast, in our study, 31.3% of the patients complained about a decrease in their mobility since the beginning of the restrictions, mainly due to worsening of their Parkinson’s disease and cancelation of their regular therapies (e.g., physiotherapy). The discrepancy between these studies may be partly explained by differences in the degrees of preventive measures in Germany and India and the younger age of the patients in the study by Prasad et al. Within the framework of this telephone survey, we did not want to overburden the patients with too many questionnaires. However, it would be of great interest in further studies to investigate how anxiety, depression and psychotic symptoms appear in patients with Parkinson’s disease before and after COVID-19. For this purpose, disease-specific questionnaires would have to be used.

The crucial question is, what measures can improve KAP and adherence in elderly people? This study cannot provide a conclusive answer to this question. Some preliminary conclusions can nevertheless be drawn. First of all, it is crucial to know how (i.e., on which channels) we reach older people in the first place. The most important sources of information are news (television, radio, newspaper) and relatives. Direct communication via social media is therefore not very effective. Social media would only reach older people indirectly at most if younger relatives were informed via these channels. Despite the fact that almost everyone stated that they knew something about the pandemic (some even found the wealth of information too great), it became apparent that the purpose of the measures was not always understood through the existing communication channels. Perhaps it would make more sense at this point to communicate the measures in a form that allows interaction between the communication partners, e.g., via telephone consultation or personal contact (with appropriate preventive measures).

The present study has several limitations. The patients were recruited from a specialized neurological hospital, and the interviews were performed in a short time interval during the ongoing pandemic. This limits the generalizability of the results. On the other hand, it is important to keep in mind that simple dichotomous questions cannot provide a valid estimate of true adherence to preventive measures. Because of the restrictions, it was not possible to provide current clinical characteristics of the cohort by personal assessments. The clinical data provided, such as MDS-UPDRS III scores, were obtained between two and six months before the interviews were performed and can therefore only provide an estimate of the characteristics of the cohort. Nevertheless, we decided to provide these clinical data, because we assume that dramatic changes in MDS-UPDRS III scores did not occur during a few months for the whole cohort. Moreover, we think that this may help to make the cohort comparable to other Parkinson’s disease cohorts. It remains important to note that the results for some items (e.g., how do patients receive information?; what preventive measures do they perform?) are based on actively reported answers. We did not provide a selection of answers (multiple-choice) in order to avoid answers according to social desirability and in order to get an impression of what was truly prominent in the minds of the interviewed patients.

Acknowledgments

Supplementary Materials

The following are available online at https://www.mdpi.com/2077-0383/9/6/1643/s1, Table S1: The questionnaire.

Author Contributions

Conception: T.P.; Organization: U.T., A.S.; Data curation: U.T., A.S.; Formal analysis: T.P., H.M.Z.; Writing—Original Draft Preparation: H.M.Z.; Writing—Review & Editing: T.P., O.W.W. All authors have read and agreed to the published version of the manuscript.

Funding

This work was supported by a Bundesministerium für Bildung und Forschung (BMBF) grant to TP (01GY1804).

Conflicts of Interest

The authors report no conflict of interest.

References