key: cord-0928456-txadxh13 authors: Santos García, D.; Oreiro, M.; Pérez, P.; Fanjul, G.; Paz González, J.M.; Feal Painceiras, M.; Cores Bartolomé, C.; Valdés Aymerich, L.; García Sancho, C.; Castellanos Rodrigo, M. title: Impact of COVID‐19 Pandemic on Parkinson´s Disease: A Cross‐sectional Survey of 568 Spanish Patients date: 2020-08-10 journal: Mov Disord DOI: 10.1002/mds.28261 sha: f03111f40670c9604d37c3cf65e3b89f2996b020 doc_id: 928456 cord_uid: txadxh13 BACKGROUND: The aim of the present study was to know the impact of COVID‐19 pandemic on Spanish Parkinson´s Disease (PD) patients. MATERIAL AND METHODS: Descriptive, observational, cross‐sectional study. An anonymous online survey with 95 questions was distributed among patients. Responses were collected from 11/MAY/2020 to 20/JUL/2020. RESULTS: Of a total of 570 questionnaires received, 568 (99.6%) were considered valid for the analysis (mean age 63.5±12.5 years; 53% females). Five hundred fifty three patients (97.4%) were aware of the COVID‐19 pandemic and 68.8% were concerned about it; 95.6% took preventive measures. Four hundred eighty four patients (85.2%) had no contact with cases of COVID‐19 and only 15 (2.6%) had confirmed COVID‐19 disease. Although up to 72.7% remained active during confinement, 65.7% perceived a worsening of their symptoms. CONCLUSIONS: Spanish PD patients perceive the COVID‐19 pandemic with concern and responsibility. More than half experienced worsening of their symptoms during confinement. The COVID-19 pandemic has resulted in unprecedented disruptions involving every aspect of life across the globe [1] . Governments have taken several measures such as people lockdown, quarantining infected individuals and their family members, canceling public transportation, exit controls, travel and contact restrictions, curfews, school closures, and requiring people to wear mouth and nose masks [2] [3] [4] . The healthcare sector has undergone dramatic changes as well to cope with the current needs, being the major impact of this social and health crisis on patients with chronic diseases [5] . Although there is no evidence that patients with PD have a higher risk of contracting COVID-19 or have worse outcomes [6, 7] , the impact of stress, selfisolation, depression and anxiety, as well as the consequences of the health system restrictions and prolonged immobility because of the lockdown may have several shortterm as well as long-term adverse consequences for people with PD, such as worsening of motor function and stress-related psychiatric symptoms such as anxiety and depressive mood [8] [9] [10] [11] [12] . The main objective of the present study was to know how the COVID-19 pandemic has affected Spanish PD patients based on data from a sample of patients interviewed through an anonymous and voluntary online survey. to answer the survey was between 10 and 15 minutes. The survey was in Spanish in electronic format. Participation was voluntary and anonymous, so that anyone who deems it appropriate can participate. In the questionnaire it was clear that the participant must have PD or be the caregiver or a family member of a PD patient alive or who had died during the pandemic (since March 2020), with the data collected referring to their sick family member (except part III). The study was launched on May 11, 2020 and disseminated on social networks and different media. Responses were collected from May 11, 2020 to July 20, 2020. It was approved by the regional ethics committee from Galicia. Data were processed using SPSS 20.0 for Windows. The value of p was considered significant when it was < 0.05. Of a total of 570 questionnaires received, 568 (99.6%) were considered valid for the analysis. Three hundred twenty seven (57.6%) surveys were answered by PD patients, 238 (41.9%) by caregivers and 3 (0.5%) by a relative of a patients with PD who died. Responses from 49 provinces from Spain were received, 46.7% during the first 3 days. Mean age of patients was 63.5 ± 12.5 years (range from 30 to 92) and 53% (N=301) were females. Sociodemographic data are shown in Table 1 . Mean disease duration was 8.4 ± 5.6 years (range from 1 to 30). More than half of the patients suffered from tremor, rigidity, falls, motor fluctuations, dyskinesias, anxiety, depression, and pain, and about 1 in 3 presented with cognitive problems and behavioral disorders ( Table 2 -C) . Symptoms related to PD and comorbidities were shown in Table 2 . pandemic from 0 to 10 was 6.9 ± 2.5 (range from 0 to 10), with 64.7% of the scores between 7 and 10. When PD patients who had COVID-19 disease were compared with patients who did not have the infection, none of the patients who had COVID-19 had hallucinations compared with 23.4% of those who did not have the infection ( This article is protected by copyright. All rights reserved. This study, the largest one carried out to determine the impact of COVID-19 on patients with PD, finds that most patients were aware of the COVID-19 pandemic, were fearful of the risk of contagion, and met prevention standards in a remarkably responsible way. Furthermore, more than half of the patients answered that they had worsened their PD's symptoms during confinement. Although the study was not designed to determine the prevalence of COVID-19, the data suggests that the percentage of patients affected by the infection could be rather low. Three studies using similar methodology, a semi-structured interview directed at patients and/or caregivers, have been published to date [9] [10] [11] . Prasad et al. [9] reported that 100% of 100 patients and 100 caregivers were aware of the pandemic in a study conducted in India. Of 99 PD patients from Germany, all but 3 patients (missing data) answered being informed, more than half well or very well, and even 5.1% with too much information about the virus. As in previous studies, the most widely used medium for receiving information was television. However, Spanish PD patients participating in this study were more fearful of contracting the COVID-19, up to 42%, compared to less than 10% [9] or 28% [11] in other studies. A consequence of this fear could be the high degree of compliance with prevention standards according to the responses obtained, with nearly 90% complying with rigorous containment, hand washing, and use of a mask. An important observation is that up to 66% of the patients perceived a worsening of their symptoms during confinement and up to 70% answered that the pandemic had had a negative impact on them. Bradykinesia, sleep problems, rigidity, and gait disturbances were the symptoms that most frequently worsened, probably Accepted Article This article is protected by copyright. All rights reserved. related to decreased physical activity and psychological stress. Our results are in line with a previous study conducted in Italy [12] , which like Spain, has been one of the countries most punished by COVID-19. The closure of patient associations and confinement has been able to cause a decrease in patient mobility [2, 7, 13] , despite the fact that in our population up to 72.7% answered staying active doing exercises and almost half performed therapies after having contacted the Spanish Parkinson's Federation or a patient association website. Moreover, social distancing may result in feelings of loneliness and depression [13, 14] and psychological stress reduce the efficacy of dopaminergic medications [15] . Very recently, 55 percent of people with PD The consequences of the pandemic on the medical care of patients is another factor to consider [17] [18] [19] [20] [21] [22] [23] . Finally, the pandemic has not had consequences only on patients but also on caregivers too, as reported [24] . Our results shown that the overall mean impact of the pandemic on the PD patient´s caregiver was similar to that of the patient. In conclusion, although the present study has limitations due to the methodology, it demonstrates that Spanish patients with PD perceive the COVID-19 pandemic with concern and great responsibility. More than half experienced worsening of their symptoms during confinement. More studies to know the impact of the pandemic globally are needed. Accepted Article Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) and coronavirus disease-2019 (COVID-19): the epidemic and the challenges The Impact of the COVID-19 Pandemic on Parkinson's Disease: Hidden Sorrows and Emerging Opportunities Interventions to mitigate early spread of SARS-CoV-2 in Singapore: A modelling study The efect of control strategies to reduce social mixing on outcomes of the COVID-19 epidemic in Wuhan, China: A modelling study Underlying chronic disease and COVID-19 infection: a state-of-the-art review Movement disorders in the world of COVID-19 Impact of the COVID-19 pandemic on Parkinson's disease and movement disorders Adaptive neurology in COVID-19 times Parkinson's Disease and COVID-19: Perceptions and Implications in Patients and Caregivers Incidence of Anxiety in Parkinson's Disease During the Coronavirus Disease (COVID-19) Pandemic Knowledge, Attitudes, Practices, and Burden During the COVID-19 Pandemic in People with Parkinson's Disease in Germany Self-reported needs of patients with Parkinson's disease during COVID-19 emergency in Italy COVID-19: An Early Review of Its Global Impact and Considerations for Parkinson's Disease Patient Care The Fear of COVID-19 Scale: Development and Initial Validation Cognitive Stress Reduces the Effect of Levodopa on Parkinson's Resting Tremor Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson's disease: A double-blind, randomised controlled trial One solution for patients with Parkinson's disease in COVID-19 era Management of Advanced Therapies in Parkinson's Disease Patients in Times of Humanitarian Crisis We would like to thank all patients, caregivers and all persons, companies or institutions collaborating in this project. Especially many thanks to Fundación Curemos el Parkinson (https://curemoselparkinson.org/), Asociación Parkinson Galicia -Coruña This article is protected by copyright. All rights reserved.