scholarly journals A Preliminary Investigation of the Views of People With Parkinson's (With and Without Psychosis) and Caregivers on Participating in Clinical Trials During the Covid-19 Pandemic: An Online Survey

2020 ◽  
Vol 11 ◽  
Author(s):  
Katie McGoohan ◽  
Anneesa Amjad ◽  
Natasha Ratcliffe ◽  
Sagnik Bhattacharyya ◽  
Gillian Granville ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Trials ◽  
Clinical Research ◽  
Online Survey ◽  
Preliminary Investigation ◽  
Well Being ◽  
Support Network ◽  
Ongoing Research ◽  
Related Research

Background: The coronavirus pandemic is having a profound impact on non-COVID-19 related research, including the delivery of clinical trials for patients with Parkinson's disease.Objectives: A preliminary investigation to explore the views of Parkinson's disease (PD) patients, with and without experience of psychosis symptoms, and carers on the resumption of clinical research and adaptations to trials in light of COVID-19.Methods: An anonymous self-administered online survey was completed by 30 PD patients and six family members/carers via the Parkinson's UK Research Support Network to explore current perceptions on taking part in PD research and how a planned clinical trial for psychosis in PD may be adapted so participants feel safe.Results: Ninety-one percent of respondents were enthusiastic about the continuation of non-COVID-19 related research as long as certain safety measures were in place. Ninety-four percent stated that they would be happy to complete assessments virtually. However, they noted that care should be taken to ensure that this does not exclude participants, particularly those with more advanced PD who may require assistance using portable electronic devices. Regular and supportive communication from the research team was also seen as important for maintaining the psychological well-being of participants while taking part in the trial.Conclusions: In the era of COVID-19 pandemic, standard approaches will have to be modified and rapid adoption of virtual assessments will be critical for the continuation of clinical research. It is important that alongside the traditional methods, new tools are developed, and older ones validated for virtual assessments, to allow safe and comprehensive assessments vital for ongoing research in people with Parkinson's.

scholarly journals Genetic aspects of non-motor symptoms in Parkinson’s disease

2019 ◽  
pp. 86-87
Author(s):  
N. Y. Safonova
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Research ◽  
Functional Status ◽  
Clinical Features ◽  
Well Being ◽  
Motor Symptoms ◽  
Research And Practice ◽  
Non Motor Symptoms

Non-motor symptoms are common in Parkinson`s disease and reflect the multisystem nature of the disorder. Parkinson’s disease is highly heterogeneous in early clinical features and later outcomes. This makes classifying genetic subgroups of PD relevant to clinical research and practice, particularly if they are prognostically relevant. Non-motor sypmptoms may be detrimental to patients’ functional status and sense of well-being.

scholarly journals COVID-19’s Impact on Burden and Nutrition for Family Caregivers of People With Parkinson’s Disease

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 321-321
Author(s):  
Dara LoBuono ◽  
Rachel Robin ◽  
Mehmet Uygur
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Dietary Patterns ◽  
Online Survey ◽  
Well Being ◽  
Dietary Behaviors ◽  
Physical Strain ◽  
Snack Foods

Abstract The COVID-19 pandemic has worsened Parkinson’s disease (PD) symptoms; however how COVID-19 has impacted family caregivers of people with PD (PwPD) is unknown. A 38-item open-and closed-ended online survey that explored caregiver burden and nutrition behaviors during COVID-19 was completed by 34 caregivers. Quantitative variables related to how COVID-19 has impacted caregiver burden are reported as percentages. Responses to open-ended questions related to COVID-19’s impact on caregiver burden and dietary behaviors were double-coded by two researchers, differences in codes were discussed until consensus was reached, and themes were finalized. The mean age of caregivers was 67.2±8.7 (47-82 years of age) and the majority were female (64.7%). Since the COVID-19 pandemic, 61.7% of caregivers felt their relationship with their PwPD stayed the same or slightly improved, 41% reported having to make a slight or increased number of adjustments to their schedules to provide care and experienced a slight or increased physical strain because of providing care. 58.8% reported a slight or increased number of times they felt sad/hopeless and 76.5% reported a slight or increased number of times they felt anxious/worried. Themes related to COVID-19’s impacts on caregiver burden included: fear, stress, and isolation; increased caregiver responsibilities; no change in caregiving. Themes highlighting COVID-19’s impact on dietary behaviors included: healthier dietary patterns; increase in snack foods and boredom eating; no change in dietary patterns. Results suggest COVID-19 has negatively impacted caregiver well-being and further exploration in changes in dietary intake are warranted.

scholarly journals Disease modifying treatment trials in Parkinson’s disease: how to balance expectations and interests of patients, physicians and industry partners?

2020 ◽  
Vol 2 (1) ◽  
Author(s):  
D. Berg ◽  
K. Eggert ◽  
B. Haslinger ◽  
J. Kassubek ◽  
B. Mollenhauer ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Trials ◽  
Well Being ◽  
Disease Course ◽  
Ethical Challenges ◽  
Great Expectations ◽  
Disease Modifying ◽  
New Treatments ◽  
Disease Modifying Treatment

Abstract Background The advent of therapeutic strategies designed to modify the disease course in Parkinson’s disease has raised great expectations in the currently conducted clinical trials. However, we see ethical challenges in the cooperation of industry and clinical partners, specifically evident in the way recruitment is performed. We here discuss the different positions and challenges of all involved to set the stage for a study and recruitment culture taking into account the expectations of all: (i) patients and their caregivers, ready to take the considerable burden of clinical trials in hope for the development of disease-modifying treatments; (ii) physicians and study nurses, obligated to the patients’ well-being and benefit who accompany and supervise patients closely as basis for the performance of elaborate clinical trials (iii) industrial partners, investing years of efforts and finances to develop new treatments. Conclusions We conclude that the current competitive race for enrollment in clinical studies in PD is challenging the primary goal to ensure patients’ benefit and formulate requests to the industrial partners to encounter these concerns.

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

scholarly journals Bringing Advanced Therapies for Parkinson’s Disease to the Clinic: The Scientist’s Perspective

2021 ◽  
pp. 1-6
Author(s):  
Mark Tomishima ◽  
Agnete Kirkeby
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Clinical Trials ◽  
Phase I Clinical Trials ◽  
Preclinical Models ◽  
Preclinical Development ◽  
Dopaminergic Medication ◽  
Gene Therapies ◽  
Advanced Therapies ◽  
New Phase

After many years of preclinical development, cell and gene therapies have advanced from research tools in the lab to clinical-grade products for patients, and today they constitute more than a quarter of all new Phase I clinical trials for Parkinson’s disease. Whereas efficacy has been convincingly proven for many of these products in preclinical models, the field is now entering a new phase where the functionality and safety of these products will need to stand the test in clinical trials. If successful, these new products can have the potential to provide patients with a one-time administered treatment which may alleviate them from daily symptomatic dopaminergic medication.

scholarly journals How COVID-19 will boost remote exercise-based treatment in Parkinson’s disease: a narrative review

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Agnes Langer ◽  
Lucia Gassner ◽  
Anna Flotz ◽  
Sebastian Hasenauer ◽  
Jakob Gruber ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Best Practice ◽  
Well Being ◽  
Functional Mobility ◽  
Physical Mobility ◽  
Conventional Physiotherapy ◽  
Difficult Times ◽  
Non Motor Symptoms

AbstractThe lack of physical exercise during the COVID-19 pandemic-related quarantine measures is challenging, especially for patients with Parkinson’s disease (PD). Without regular exercise not only patients, but also nursing staff and physicians soon noticed a deterioration of motor and non-motor symptoms. Reduced functional mobility, increased falls, increased frailty, and decreased quality of life were identified as consequences of increased sedentary behavior. This work overviews the current literature on problems of supplying conventional physiotherapy and the potential of telerehabilitation, allied health services, and patient-initiated exercise for PD patients during the COVID-19 period. We discuss recent studies on approaches that can improve remote provision of exercise to patients, including telerehabilitation, motivational tools, apps, exergaming, and virtual reality (VR) exercise. Additionally, we provide a case report about a 69-year-old PD patient who took part in a 12-week guided climbing course for PD patients prior to the pandemic and found a solution to continue her climbing training independently with an outdoor rope ladder. This case can serve as a best practice example for non-instructed, creative, and patient-initiated exercise in the domestic environment in difficult times, as are the current. Overall, many recent studies on telemedicine, telerehabilitation, and patient-initiated exercises have been published, giving rise to optimism that facilitating remote exercise can help PD patients maintain physical mobility and emotional well-being, even in phases such as the COVID-19 pandemic. The pandemic itself may even boost the need to establish comprehensive and easy-to-do telerehabilitation programs.

scholarly journals A-079 Hand Preference in Men and Women with Parkinson’s Disease: A Preliminary Investigation

2020 ◽  
Vol 35 (6) ◽  
pp. 871-871
Author(s):  
Ryan J ◽  
Kreiner D ◽  
Gontkovsky S ◽  
Paolo A
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Neurological Disorders ◽  
Rating Scale ◽  
Preliminary Investigation ◽  
Hand Preference ◽  
Dominant Hand ◽  
Healthy Individuals ◽  
Left Handed ◽  
Increased Risk

Abstract Objective Research has identified common genetic influences on handedness and neurological/mental health phenotypes. It also has been shown there may be increased risk for development of neurological disorders/diseases among individuals naturally left-handed or demonstrating non-right-hand preference. This investigation examined prevalence of right-handed versus non-right-handed individuals with Parkinson’s disease (PD) compared to controls. Method Participants were 264 patients with PD (mean age = 69.83 years) and 256 control volunteers (mean age = 71.42 years). Mean Dementia Rating Scale composites for the groups were 123.68 and 136.00, respectively. Participants self-identified their dominant hand for writing and usage was confirmed during the session. Results Proportions of non-right- and right-handed controls (7.0% and 93.0%) versus individuals with PD (6.8% and 93.2%) did not differ. Changes in proportions of non-right- and right-handedness across age ranges were not significant for controls or patients. There was a trend for a larger proportion of women (55.9%) versus men among controls (44.1%), □ 2 (1) = 3.29, p < .10; whereas, the proportion of men (64.4%) with PD was larger than that of women. (35.6%), □ 2 (1) = 21.31, p < .001. For controls and patients, non-right and right handedness gender proportions were similar. Conclusions This study is the first to assess handedness prevalence rates in PD. Results suggest prevalence of non-right handedness is similar in PD and healthy individuals and does not appear to differ markedly by gender or with advancing age. The occurrence of a trend for a larger proportion of women than men among controls is consistent with census-based statistics.

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