Impact of advanced Parkinson's disease on caregivers: an international real-world study.

BACKGROUND: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. METHODS: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). RESULTS: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). CONCLUSIONS: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. TRIAL REGISTRATION: N/A.

Improving work life balance among female educationists during the COVID-19 lockdown.

BACKGROUND: The entire education industry switched from offline to online modes as a result of the coronavirus outbreak. Numerous teachers who were diagnosed with musculoskeletal, psychological, and other neurodegenerative diseases have reported increased exhaustion, lack of sleep, a decline in quality of life (QoL), a decrease in physical activity, and excessive stress from online classes during the COVID-19 lockdown, especially women. OBJECTIVE: The aim of this study is to evaluate the effectiveness of three-modal exercise on fatigue, sleep, QoL as well as to determine the relationship between age, disease severity, disease stage and working years with women diagnosed with Parkinson's disease (PD). METHODS: In this randomized controlled trial, 44 female educators in stages I-II with PD who were between the ages of 40 and 60 volunteered. For a total of 36 sessions over the course of six weeks, Group A received a three-modal fitness program through online video sessions, whereas Group B received Nordic walking. The outcome measures included the Fatigue Severity Scale, Parkinson's Disease Sleep Scale, and Parkinson's Disease Quality of Life Questionnaire-39. RESULTS: Age, Hoehn and Yahr scale, working years, and PD in years did not correlate with each other (p > 0.50). The three-modal exercise experimental Group A showed statistically significant improvement in QoL (p 0.001), sleep (p 0.001), and fatigue (p 0.001). CONCLUSION: Women in the field of education who participated in a three-modal exercise programme for PD reported a significant improvement in their level of exhaustion, sleep patterns, and quality of life.

Mind the gap: Inequalities in mental health care and lack of social support in Parkinson disease.

Inequalities in mental healthcare and lack of social support during the COVID-19 pandemic have lowered quality of life and increased overall burden of disease in people with Parkinson's (PWP). Although the pandemic has brought attention to these inequalities, they are long standing and will persist unless addressed. Lack of awareness of mental health issues is a major barrier and even when recognized disparities based on race, gender, and socioeconomic factors limit access to already scarce resources. Stigma regarding mental illness is highly prevalent and is a major barrier even when adequate care exists. Limited access to mental healthcare during the pandemic and in general increases the burden on caregivers and families. Historically, initiatives to improve mental healthcare for PWP focused on interventions designed for specialty and academic centers generally located in large metropolitan areas, which has created unintended geographic disparities in access. In order to address these issues this point of view suggests a community-based wellness model to extend the reach of mental healthcare resources for PWP.

The plight of loneliness in Parkinson's disease: New opportunities.

The human phenomenon of loneliness has been increasing in prominence across societies, with precipitous increase since COVID-19, and individuals with Parkinson's disease are not unscathed. Loneliness is of clinical relevance as it is cross-sectionally related to, and longitudinally precedes, mortality and other health risks, including worse motor, cognitive, and behavioral-psychological functioning. Relatively few studies have evaluated loneliness, or associated social experiences, in the context of Parkinson's, but the existing data is provocative. The authors advocate for clinicians' awareness and researchers' investigational focus.

Impact of COVID-19 pandemic on patients with Parkinson's disease: A meta-analysis of 13,878 patients.

BACKGROUND: The clinical, neuropsychological, and socioeconomic factors affecting Parkinson's disease (PD) during COVID-19 pandemic across different populations have not been systematically studied. To address this, we conducted a meta-analysis of factors that impact the well-being of PD patients during the pandemic. METHODS: Medline and Embase were searched for articles published between 2020 and 2022. We conducted random-effects pooling of estimates and meta-regression. RESULTS: Twenty-seven studies involving 13,878 patients from America, Europe, Asia, and Africa were included. There is a high prevalence of decreased physical activity and exercise, and worsening motor and neuropsychiatric symptoms (17-56%). Patients in lower-income countries more frequently reported worsening anxiety (adjusted OR [aOR] 8.94, 95% confidence interval [CI] 1.62-49.28, p = 0.012), sleep (aOR 5.16, 95% CI 1.15-23.17, p = 0.032), and PD symptoms (aOR 3.57, 95% CI 0.96-13.34, p = 0.058). Lockdown was associated with decreased exercise levels (aOR 0.13, 95% CI 0.02-0.78, p = 0.025) and worsening mood (aOR 0.48, 95% CI 0.24-0.95, p = 0.035). Younger age correlated with decreased physical activity (ß -0.30, 95% CI -0.53 to -0.07, p = 0.012), exercise (ß -0.11, 95% CI -0.15 to -0.07, p < 0.001), worsening PD symptoms (ß -0.08, 95% CI -0.15 to -0.01, p = 0.018), and sleep (ß -0.14, 95% CI -0.27 to 0, p = 0.044). Female PD patients reported a greater decrease in physical activity (ß 11.94, 95% CI 2.17-21.71, p = 0.017) and worse sleep (ß 10.76, 95% CI 2.81-18.70, p = 0.008). CONCLUSION: This large meta-analysis of PD patients in diverse populations identified a high prevalence of physical and mental worsening during the COVID-19 pandemic, with patients in lower-income countries being exceptionally vulnerable.

Psychological outcomes of the COVID-19 pandemic in patients with Parkinson's disease: A systematic review.

BACKGROUND: There were concerns about the psychological outcomes of coronavirus disease from the beginning of the pandemic. Parkinson's disease (PD) patients seem to be more vulnerable to mental health disorders like stress, depression, anxiety, or worsening quality of life during COVID-19 lockdown. We aimed to conduct a systematic review to investigate the psychological outcomes of COVID-19 among the PD population. METHODS: A systematic search was conducted using PubMed, Scopus, and Web of Science. We included original studies which reported the psychological impact of COVID-19 in the PD population with a minimum of 10 cases. RESULTS: After the screening, 21 studies with a total of 5236 PD cases were included in our qualitative synthesis. Depression, anxiety, and to less extent sleep disorders and apathy are the most studied psychological outcomes. Most of the studies indicated that the severity or the prevalence of psychiatric disturbance increased due to the COVID-19 pandemic in PD patients. The prevalence of anxiety was 14% to 66.5%, while depression was reported in 0% to 50% of PD patients during and after the pandemic. Also, sleep problems were reported in 35.4% to 68.9% of PD patients. CONCLUSION: Considering the overall trend of increment in the severity of the main psychological outcomes observed in the present systematic review, it is suggested that future studies conduct a more accurate analysis of the prevalence, severity, and associated pathology of psychological outcomes of COVID-19 in PD patients.

Attitudes Toward Telehealth Services Among People Living With Parkinson's Disease: A Survey Study.

BACKGROUND: Telehealth has been widely adopted in providing Parkinson's disease care during the coronavirus disease 2019 pandemic. OBJECTIVE: The aim of this study was to survey people living with Parkinson's disease (PwPD) about their attitudes toward and utilization of telehealth services. METHODS: A survey was administered to PwPD via Parkinson's Foundation and Columbia University mailing lists. RESULTS: Of 1,163 responses, 944 complete responses were analyzed. Telehealth awareness was 90.2% (850/942), and utilization was 82.8% (780/942). More than 40% of PwPD were equally or more satisfied with telehealth compared with in-person visits in all types of services used. The highest satisfaction was observed in speech-language pathology appointments (78.8%, 52/66) followed by mental health services (69.2%, 95/137). CONCLUSIONS: In selected circumstances and indications, such as speech-language pathology and mental health services, telehealth may be a useful tool in the care of PwPD beyond the coronavirus disease 2019 pandemic. © 2022 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson Movement Disorder Society.

[The questionnaire survey regarding the impact of COVID-19 pandemic on Parkinson's disease patients].

We conducted the multicenter questionnaire survey targeting patients with Parkinson's disease (PD) in order to investigate the impacts on their daily lives and their requests to hospitals in the pandemic of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Mainly using open-ended questionnaire, we asked their anxiety, troubles they are facing, and requests toward hospitals in the pandemic of SARS-CoV-2. Two hundred fifth-eight PD patients answered the questionnaire. There were various opinions about anxiety such as "PD patients are susceptible and vulnerable to SARS-CoV-2" (36.8%). Concerning the troubles in the pandemic, the most frequent answer was that they couldn't participate in the rehabilitation and elderly day care (38.4%). Relatively many PD patients requested telemedicine (29.5%), whereas some people hoped face-to-face medical care (8.1%). There were demands about the delivery of medications (50.0%), the establishment of telephone consultations (43.8%), resources for rehabilitation at home (43.8%). The medical care adapted to the anxiety, trouble and requests of PD patients will be required in the era when we have to live with SARS-CoV-2.

Parkinson's patients situation during the SARS CoV-2 pandemic and their interest in telemedicine A cross-sectional study.

BACKGROUND: During the SARS CoV-2 pandemic, telemedicine experienced an enormous boom. Also, for Parkinson's patients there are upcoming alternatives to regular care. OBJECTIVE: The aim of the present study was to interview Parkinson's patients under the impression of the first lockdown in Germany about their health care situation, but especially about the use of and attitudes towards videotherapy and -consultation. METHODS: Northern German members of the German Parkinson Association were mailed a 16-item questionnaire including demographic questions on a one-time basis. The voluntary participants answered regarding their health care situation during the first German SARS CoV-2 lockdown, as well as attitudes towards videotherapy/-consultations. RESULTS: The 332 (of 974 questionnaires) responding evaluated their care situation predominantly (58.7%) unchanged during lockdown. There was hardly any previous experience in the areas of videotherapy and -consultations (15.4% and 3%, respectively), but at the same time mostly imaginability of implementation (54.2% and 56%, respectively) and the belief that they could motivate themselves to do so (51.8%). A total of 69% welcomed technical support for the implementation of videotherapy. CONCLUSION: In principle, there seems to be both, a need and an interest in telematics in healthcare such as videotherapy and video consultations, even if further barriers such as technical implementation need to be addressed. An expansion of telemedical services and infrastructure seems desirable not only in the pandemic situation, but also in the long term against the backdrop of demographic change, especially in an area like Schleswig-Holstein. Further studies are needed.

'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19.

OBJECTIVES: The purpose of this study was to explore the experiences of individuals with Parkinson's through the theoretical lens of illness uncertainty during the first UK full lockdown period (March-June 2020) put in place due outbreak of the COVID-19 pandemic. METHODS: Individual semi-structured interviews were carried out via telephone in May 2020 with 10 individuals with Parkinson's (six men and four women) recruited from Parkinson's UK. Interviews were recorded and transcribed verbatim, and thematic analysis was adopted to analyse the resulting data. RESULTS: Four overarching themes emerged from the interview data: (1) COVID-19 amplifying existing fears and difficulties around the uncertainty of Parkinson's; (2) practical and psychological efforts to manage uncertainty; (3) benefit-finding as a way of acknowledging the positives of lockdown; (4) risk and future management in the context of uncertainty. DISCUSSION: Participants reported a range of implicit and explicit strategies to cope with the 'double whammy' of uncertainty caused by having Parkinson's during a global pandemic. While these were generally successful in maintaining well-being, it is important that such successful accounts are used to help inform novel strategies and interventions targeting individuals who might need additional support.

Clinical perception and management of Parkinson's disease during the COVID-19 pandemic: A Canadian experience.

BACKGROUND: The COVID-19 pandemic has necessitated the social isolation of the population and the rapid implementation of remote care for patients with neurodegenerative diseases. The objective of this study was to explore the perceived impact of confinement in patients with Parkinson's disease and document the effects of gender and living environment. METHODS: We recruited two cohorts from the Canadian provinces of Québec and Alberta, which differed in the dynamics of COVID-19 spreading at the time of the study, and administered a questionnaire on the perceived effects of confinement on daily living and disease management. RESULTS: The data reveals that approximately half of the patients experienced a change in one or more clinical symptoms, with differences observed between gender (e.g. day-to-day changes in slowness in men, aggravated headaches in women) and geographic location (e.g. increased depression in Alberta but reduced sleep quality in Québec). Furthermore, participants identifying as women or living in Alberta implemented more frequently home or online exercise. Lastly, high levels of satisfaction with phone or video consultations did not translate into a sustained interest to pursue this mode of healthcare. CONCLUSIONS: This study suggests that COVID-19-related confinement affected Parkinson's disease manifestation and management. Patients also reported varying levels of interest to continue remote care. A number of differences reported in our study were seemingly related to gender and living environment.

Longitudinal observational study of boxing therapy in Parkinson's disease, including adverse impacts of the COVID-19 lockdown.

BACKGROUND: Parkinson's Disease (PD) is a highly prevalent neurodegenerative disease whose incidence is increasing with an aging population. One of the most serious manifestations of PD is gait instability, leading to falls and subsequent complications that can be debilitating, even fatal. Boxing therapy (BT) uses gait and balance exercises to improve ambulation in people with PD, though its efficacy has not yet been fully proven. METHODS: In the current longitudinal observational study, 98 participants with idiopathic PD underwent twice-weekly BT sessions. Primary outcome was self-reported falls per month; secondary outcomes were quantitative and semi-quantitative gait and balance performance evaluations. Statistical methods included segmented generalized estimating equation with an independent correlation structure, binomial distribution, and log link. RESULTS: The average number of self-reported falls per month per participant decreased by 87%, from 0.86 ± 3.58 prior to BT, to 0.11 ± 0.26 during BT. During the lockdown imposed by COVID-19, this increased to 0.26 ± 0.48 falls per month. Females and those > 65 years old reported the greatest increase in falls during the lockdown period. Post-lockdown resumption of BT resulted in another decline in falls, to 0.14 ± 0.33. Quantitative performance metrics, including standing from a seated position and standing on one leg, largely mirrored the pattern of falls pre-and post-lockdown. CONCLUSIONS: BT may be an effective option for many PD patients.

Impact of the COVID-19 Pandemic on the Quality of Life of Patients with Parkinson's Disease and Their Caregivers: A Single-Center Survey in Tochigi Prefecture.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected the mental health of the general population. OBJECTIVE: We investigated the determinants of quality of life (QOL) in Parkinson's disease (PD) patients during the COVID-19 pandemic. METHODS: Impacts of lifestyle changes due to the COVID-19 pandemic on 100 patients with PD and their caregivers/spouses were assessed. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression. The physical component summary (PCS) and mental component summary (MCS) scores of the short form (SF)-8 were used to evaluate health-related QOL. RESULTS: Regarding health-related QOL, physical function, role physical, general health, vitality and the PCS score were significantly worse in PD patients than in caregivers. Worsening of PD-related symptoms, increased stress, and decreased physical activity were observed in 29.0%, 37.0% and 44.0% of PD patients, respectively. Sixteen patients (16.0%) experienced problems with hospital access, but none reported medication shortages. Strong concerns about COVID-19 were reported by 47.0% of caregivers and 50.0% of PD patients. In PD patients, increased gait disturbance and rigidity, disease severity, smoking, the levodopa equivalent dose and decreased body weight predicted a worse PCS score; anxiety, depression, female sex, stress and long disease duration predicted a worse MCS score. In caregivers, age and smoking contributed to a worse PCS score; depression, stress and worsening patient mood contributed to a worse MCS score. CONCLUSION: We report the negative impacts of the COVID-19 pandemic on health-related QOL and its determinants in PD patients and their caregivers.

A French survey on the lockdown consequences of COVID-19 pandemic in Parkinson's disease. The ERCOPARK study.

BACKGROUND: In 2020 the coronavirus disease 19 (COVID-19) pandemic imposed a total and sudden lockdown. We aimed to investigate the consequences of the first COVID-19 lockdown (mid-March - mid-April 2020) on motor and non-motor symptoms (NMS) in a cohort of French people with Parkinson's disease (PwP). METHODS: PwP were enrolled either by an on-line survey sent from the national France Parkinson association (FP) to reach the French community of PwP or as part of outpatients' telemedicine visits followed by an hospital-based Parkinson Expert Center (PEC). All patients were evaluated using the same standardized questionnaire assessing motor and NMS (including a list of most disabling, new or worsened symptoms and Patient's Global Impression-Improvement scales [PGI-I]) psycho-social queries and quality of life. RESULTS: 2653 PwP were included: 441 (16.6%) in the PEC group and 2122 (83.4%) in the community-based group. Physiotherapy was interrupted among 88.6% of the patients. 40.9% referred a clinical modification of their symptoms. Based on the questionnaire, pain (9.3%), rigidity (9.1%) and tremor (8.5%) were the three most frequently new or worsened reported symptoms. Based on the PGI-I, the motor symptoms were the most affected domain, followed by pain and psychic state. PwP in community-based group tended to have more frequent worsening for motor symptoms, motor complications, pain and confusion than those of the PEC group. CONCLUSIONS: The first COVID-19 lockdown had a negative impact on motor and NMS of PwP. Efforts should be allocated to avoid interruption of care, including physiotherapy and physical activities and implement telemedicine. .

COVID-19 social distancing: negative effects on people with Parkinson disease and their associations with confidence for self-management.

BACKGROUND: The purpose of this study was to describe the effects of COVID-19 social distancing on the function, health, and well-being of people with Parkinson disease (PD), and test the association of these effects with patients' activation levels, i.e., their skills and confidence in managing their health. METHODS: Community-dwelling individuals with PD answered an anonymous web-based survey. Part 1 included 27 multiple-choice questions regarding changes in function, health, medical care, and well-being. Part 2 consisted of the Patient Activation Measure, which enquired about skills and confidence in managing one's health. RESULTS: Respondents (N = 142) reported decreases in various function (24.8%-37.3%), health (33.8%-43%), and well-being (26.1%-47.1%) domains. Rehabilitation ceased for 61.2%. Among those reporting a worsening of health, 67.8% associated this with the cessation of rehabilitative treatments or decrease in physical activity. Patients' activation levels were inversely correlated with increased assistance for activities of daily living, increased tiredness, worsening symptoms, and lack of support from family and friends. CONCLUSIONS: Social distancing had a major negative impact on the health and function of people with PD. PRACTICAL IMPLICATIONS: Supporting people with PD skills and confidence in managing health may preserve their physical and mental health during this period of dramatic changes in life's circumstances.

The global pandemic has permanently changed the state of practice for pre-DBS neuropsychological evaluations.

The evaluation and management of patients with movement disorders has evolved considerably due to the COVID-19 pandemic, including the assessment of candidates for deep brain stimulation (DBS) therapy. Members of the Neuropsychology Focus Group from the Parkinson Study Group Functional Neurosurgical Working Group met virtually to discuss current practices and solutions, build consensus, and to inform the DBS team and community regarding the complexities of performing DBS neuropsychological evaluations during COVID-19. It is our viewpoint that the practice of neuropsychology has adapted successfully to provide tele-neuropsychological pre-DBS evaluations during the global pandemic, thus permanently changing the landscape of neuropsychological services.

Impact of the COVID-19 pandemic on physical activity, anxiety, and depression in patients with Parkinson's disease.

The coronavirus disease 2019 pandemic has yielded containment measures with detrimental effects on the physical and mental health of the general population. The impacts of lockdown on clinical features in Parkinson's disease are not well known. We aimed to compare the physical activity, anxiety-depression levels between Parkinson's disease patients and controls during lockdown. Forty-five Parkinson's disease patients and 43 controls were evaluated with the Physical Activity Scale for the Elderly (PASE) and Hospital Anxiety and Depression Scale (HADS) via telephone interview. The patients' disease-related symptoms were worsened during lockdown though regular Parkinson's disease medication use. The PASE scores were low in both groups. The HADS scores of groups were below the cutoff point of anxiety-depression presence. Pandemic restrictions could lead to worsening of the motor and nonmotor symptoms in Parkinson's disease.