Rationale

Objective of this cross sectional-study was to investigate the condition of Parkinson’s patients during the corona pandemic on basis of a comprehensive online self-answered questionnaire. This was done in particular to better assess their health status on the one hand, but also to find out how high the willingness is to use video therapy as a telemedical treatment form in this context.

Medical care

During the period covered by the survey, 195 (58.7%) of Parkinson’s patients experienced no change in the frequency of their medical treatment. A proportion of 71 (21.4%) patients reported that the frequency of treatment had decreased, while subjectively 61 (18.4%) patients reported that the number of treatments actually increased (n/a: n = 5; 1.5%).

At the same time, a clear majority had no problem coming into contact with medical personnel (n = 277; 83.4%), while only 53 respondents (16%) stated that they had contact difficulties (n/a: n = 2; 0.6%). Accordingly, 283 (85.2%) respondents felt that they were satisfactorily cared for by the German health care system and only 43 (13%) indicated that they felt inadequately cared for (n/a: n = 6; 1.8%). Regarding sports and support groups as a possible support tool, 168 (50.6%) stated that they had no further contact with group members, while 79 (23.8%) maintained such contact. It should be noted that 76 respondents (22.9%) did not appear to belong to any sports or support group and stated that the question did not concern them (n/a: n = 9; 2.7%). The internal consistency reliability coefficient (Cronbach’s alpha) for questions related to „medical care”(questions 1,2,5,8) was 0.126.

Burden/affection by the SARS CoV-2 pandemic

With regard to the Covid-19 pandemic, the average of participants felt moderately affected on a Likert-like scale (x̄ = 4.75; n = 329), with the majority rating 3/10 (17.5%). A total of 11 persons (3.3%) implied a very high level of concern with a rating of 10/10 on a Likert-like scale. At the other end of the spectrum, a total of 28 (8.4%) patients rated 1/10, indicating that they did not feel affected at all (n/a: n = 3; .9%).

Only a very small fraction of the respondents (n = 16; 4.8%) had to undergo conditional quarantine due to Covid-19, while the vast majority was not affected by such measures (n = 314; 94.6%; n/a: n = 2; .6%). For questions related to „burden/affection”(questions 3,4) by the pandemic the internal consistency reliability coefficient (Cronbach’s alpha) was 0.048.

Change in health status including mental health

In the subjective assessment of a Parkinson-related deterioration in physical condition, the respondents rated themselves on average with x̄ = 4.14 (n = 334) just below the middle on a Likert-like scale. A majority of 76 patients (22.9%) did not find their physical condition impaired at all (1/10 rating), whereas 16 patients (4.8%) found their health severely impaired (10/10 rating; n/a: n = 8; 2.4%). For a subjective worsening of the psychological condition (e.g. depressive episode) a similar result with x̄ = 4.02 (n = 326) was obtained, whilst 79 (23.8%) rated 1/10 lowest and 11 (3.3%) rated 10/10 highest scores on the Likert-like-scale (n/a: n = 6; 1,8%). For questions (questions 6,7) related to „change in health status”the internal consistency reliability coefficient (Cronbach’s alpha) was 0.846.

Maintenance of personal fitness

A large group of 110 patients (33.1%) were only able to maintain their physical fitness by independent training (e.g. gymnastics, sports) less frequently than once a week. In contrast, 64 (19.3%) reported to do such self-training at least once a week, 92 (27.7%) at least three times a week, 21 (6.8%) at least five times a week and 35 (10.5%) daily (n/a: n = 10; 3%). There was only one question related to “maintainance of personal fitness”, therefore no internal consistency reliability coefficient was calculated.

Previous experience and openness to videotherapy/-consultation, respectively technical requirements

Previous experience with video therapy (i.e. physiotherapy, speech therapy, etc.) was present in 51 patients (15.4%). The majority of 281 (84.6%) respondents had no previous experience. Even less previous experience existed with medical videoconsultation. A total of 10 respondents (3.0%) had experience with these, while 322 (97%) denied such. Nevertheless, 180 respondents (54.2%) could imagine carrying out videotherapy independently as an alternative in case of failure of the outpatient therapy (n/a: n = 3; .9%). With regard to a medical videoconsultation this was affirmed by 186 (56%; n/a: n = 4; 1.2%). Accordingly, 149 (44.9%) could not imagine videotherapy and 142 (42.8%) could not imagine a medical videoconsultation.

A total of 214 (64.5%) of those surveyed said that videotherapy would be feasible for them. In contrast, a minority of 116 (34.9%) Parkinson patients denied this possibility (n/a: n = 2; .6%). At the same time, on request the majority (n = 229; 69%) welcomed technical support for the implementation of videotherapy and under 1/3 (n = 94; 28.3%) stated that there was no need for it (n/a: n = 9; 2.7%). Over half (n = 172; 51.8%) of the respondents expected to be able to motivate themselves to undergo videotherapy on a regular basis, while just below half (n = 151; 45.5%) did not believe that they could do so (n/a: n = 9; 2.7%). A chi-square test was performed between age group and experience with videoconsultations. No expected cell frequencies were less than 5. In terms of context this resulted in a large effect, though with no significance (χ² = 0.99, p = .80, Cramer’s V = 0.55). For questions related to „previous experience with videotherapy”(questions10,11,14,15,16) Cronbach’s alpha was 0.556. Further on, we performed a chi-square test between age group and imaginability of a videoconsultation as an alternative. No expected cell frequencies were less than 5. There was a significant association between age group and imaginability of a videoconsultation with small to medium effect in terms of context (χ² = 23.78, p = .0, Cramer’s V = 0.27). Internal consistency reliability coefficient (Cronbach’s alpha) for „openness to videotherapy”(questions 12,13) was 0.716.

Key findings

We analyzed the care situation and successive experiences, or openness to telemedicine and teletherapy of Parkinson’s patients in Germany during the first lockdown of the SARS CoV-2 pandemic as a possible catalyst for this subfield of telematics in healthcare, which is still relatively little used in neurology in Germany.

A worsening of medical care assumed according to our hypotheses did not prove correct from the point of view of the Parkinson’s patients surveyed. 58.7% did not report any changes in the frequency of care, while 18.4% even reported an increase in the frequency of care. Conceivable explanations for the subjectively reported increase could be the facilitated availability of appointments, after the demand for medical services in the general population had decreased [21, 22], or indeed the sporadically observed new introduction of telemedical consultations, respectively teletherapy that was exceptionally in the pandemic situation approved for e.g. physiotherapists. Ultimately, it would be desirable to ask for details on this in future studies, as the point was not addressed in more detail in the context of the current questionnaire. However, a proportion of 21.4% reported a deterioration in medical care, which raises the question of whether this could have been at least partially mitigated by telemedicine services.

The majority of Parkinson’s patients already involved in support groups (50.6%) did not succeed in maintaining contact with the self-help system during the pandemic. Although this would make sense from a psychological perspective, preferably out of a distance e.g. via social media [14], the challenge may have been precisely in the primarily indicated communication via new media. At the same time, virtual support groups appear to be a promising, seminal instrument for connecting, educating and empowering patients [23]. From a providers point of view there seem to be different practices regarding the professional use of social media. Italian neurologists for example seem to often communicate with patients using social media (48%, respectively 56% according to different studies) such as WhatsApp, though a danger that advancement will not go hand in hand with a legal and cultural adaptation and therefore possibly create ambiguity and risks is recognized [24, 25]. To our knowledge although social media does play a role in medical and patient education [26, 27] there are no studies on German neurologists communication with patients through social media since two central hurdles arise from confidentiality and strict (health) data protection [28].

Subjectively on a Likert-like scale from one to ten there was a perceived moderate affection by the pandemic (x̄ = 4.75), moderate worsening of the physical (x̄ = 4.14) and psychological condition (x̄ = 4.02). Reasons in both directions may positively include that “only” 4.8% of participants were personally affected by having to undergo quarantine and the majority received good or even better healthcare during lockdown as discussed above. Negatively it has among the immediate risk of Covid-19 infection been discussed that there has been an emotional burden to the pandemic due to social disconnection causes, aggravation of loneliness, neglect, depression and anxiety, all of which can produce long-term health consequences [29]. In addition, there were indications that patients with other diseases no longer dared to seek treatment, resulting in „collateral damage”[30]. Failure to maintain physical activity is a fear of experts [31] that appears to be at least partially true in the group of respondents, after 33.1% reported exercising less frequently than once a week, although the majority managed to get active on one to several occasions per week. However, there is a lack of comparative figures on the physical activity of respondents prior to the pandemic. With regard to videotherapy and medical videoconsultations, there was little prior experience, although there were slight differences notable. While the clear majority had no experience with medical videoconsultation (97%), 56% could imagine it, whereas videotherapy, with which 84.6% had no experience, an only barely less 54.2% could imagine it for themselves. In comparison with an American study, a similar number of participants showed interest in telemedicine at 52.4% (among n = 1441 participants), with positive associated factors for interest including a long distance from the neurology clinic and transportation difficulties [32]. A 2019 paper also identified benefits of telemedicine such as access to specialists (62%), convenience (60%), or time savings (59%) as part of a patient survey of n = 781 Parkinson’s patients, while disadvantages included lack of hands-on-care (69%), lack of intimacy (43%), and technical difficulties (37%) [18]. A total of 64.5% estimated that videotherapy could be feasible for them and 51.8% that they could motivate themselves to do it regularly. In parallel, 69% would like support in the technical implementation. Basically, there is a positive attitude towards telemedicine in accordance with other studies, but at the same time individual experiences seem among others to depend on technical aspects [33]. From a psychological point of view there have previously been self reported clinical worsenings secondary to social distancing which can be aggravated by a precarious telehealth system which attributes a certain urgency to the implementation of remote multi-professional support. Challenges for the future therefore include the integration of easy-to-use, cost-effective systems that can be practically used by patients as well as embraced within health systems and international professional societies [34]. At the same time, concepts and strategies are needed for those who are not interested in telemedicine services at all, which was 34.9% in our study, or who stated that they could not motivate themselves to undergo videotherapy, which was 45.5% in our study. Since there have been numerous studies on positive and protective effects of physical activity on Parkinson’s disease [35, 36] it seems necessary to further investigate as to why over half of our studies respondents (51.8%) did not expect to be able to motivate themselves to undergo videotherapy on a regular basis. It is to be hoped that, against the background of a possible positive modification of the course of the disease, targeted training offers would be accepted on a broader basis. Especially since delivery via videotherapy could be scalable to a greater extent (e.g., through individual compilation of physiotherapeutic exercises from a kind of video library). As practitioners, we should therefore continue to look at what affects motivation and what might improve it (e.g., music, reward systems, etc.). There appeared to be a large correlation between age group and previous experience with videotherapy, which is not surprising insofar as younger generations are generally more likely to have come into contact with such technology or to have "grown up" with it. At the same time, the age-dependent connection between imaginability of videoconsultations seemed to be rather low to medium, which underlines that telemedicine is possible in all age groups. A paper on the topic that among others reported on successful geriatric telemedicine settings, highlighted once again that the focus of the topic must clearly go beyond simply the provision of equipment and network connectivity, and that a crucial aspect is funding in order for telemedicine to become a mainstream service [37].

Limitations

In sending the questionnaire by mail or contacting patients generally through the Parkinson’s Foundation we did anticipate potential confounders. It can be assumed that recruitment via the German Parkinson Foundation will lead to some bias. If through the Foundation one reaches anyway rather "engaged" and for new technologies possibly "more open" patients, this applies presumably potentiated for those who would answer the questionnaire in the end. It was also unknown if and to which degree participants had been exposed to new technology as means of therapy before or during the pandemic. Since the survey was conducted under the impression of the SARS CoV-2 pandemic and the associated lockdown, it would be interesting to know whether and to what extent the survey results would have been different "without the pandemic"—the present survey cannot provide any information on this. A further limitation results from the general response rate of the postal survey, after more than 598 questionnaires remained unanswered, which is statistically below the usual approx. 60% mean response rate among mail surveys published in medical journals [38], but may be due to the population of the surveyed chronically ill, often elderly patients. Also, a second reminder or renewed mailing of the questionnaires was omitted in order to obtain a rapid opinion. Furthermore, a selection bias cannot be excluded considering that severely affected persons might have answered less frequently and that only members of the self help community were surveyed, who by their membership show at least some degree of commitment. In order to simplify the answering of the questions, the questionnaire was deliberately kept clear—however, the formation of categories (e.g. with regard to the age structure) has also resulted in limitations regarding the results significancy. The discussion of individual results, e.g. why the state of health subjectively improved during lockdown, is speculative because there was no further information collected in this regard. In principle, supplementary free-text response options would have been helpful, but on the other hand, could have compromised the "quick & easy" completion. With regards to reliability for 3 out of 5 examined topics, Cronbach’s alpha turned out to be significantly below an acceptable value of >0.7. A low internal consistency and measurement with high error variance could therefore be assumed. Ultimately, however, the internal consistency only reflects the correlations of the items, and in the context of categorization, these only matched to a limited extent in terms of content. In addition, the low coefficient is possibly distorted by the predominantly categorical response formats, while interval measurements such as the Likert-like scale are only partially used.