Palliative care and Parkinson's disease : meeting summary and recommendations for clinical research

Introduction: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson’s disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. Methods: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson’s Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. Results: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. Conclusions: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers

Telerehabilitation for neurological motor impairment: a systematic review and meta-analysis on quality of life, satisfaction, and acceptance in stroke, multiple sclerosis, and Parkinson’s disease

Telerehabilitation (TR) seems to be a viable and feasible solution to face the rehabilitative challenges posed by neurological impairments and to improve patients’ quality of life (QoL). This review aims to synthesize and analyze the evidence on the impact of physiotherapy intervention through TR on QoL in patients with stroke, Parkinson’s disease (PD), and multiple sclerosis (MS), together with an evaluation of their satisfaction and technology acceptance levels. Through a systematic search of the literature and a screening process, treatment effects were assessed with meta-analyses using the standardized mean difference, setting the confidence interval at 95%. We included 28 studies in the review, which were analyzed for methodological quality, whereas 16 studies were included in the meta-analyses. The results suggest a significant improvement in QoL in patients who underwent TR. We were unable to perform analyses for satisfaction and technology acceptance outcomes due to insufficient data. Overall, motor TR has a positive impact on the QoL of patients with neurological diseases, especially in stroke patients; although caution is needed in the interpretation of the results due to the high heterogeneity found. For PD and MS, TR seems to yield comparable results to in-person treatment

Quality of care provided by Multiple Sclerosis Centers during Covid-19 pandemic: Results of an Italian multicenter patient-centered survey

Background: Covid-19 pandemic impacted on management of people with Multiple Sclerosis (pwMS). Level of satisfaction of pwMS regarding the care received by the staff of Multiple Sclerosis Centers (MSCs) during the pandemic was not fully investigated. In a large patient-centered multicenter study, the therapeutic adherence and quality of care of MSCs was assessed. Methods: In April-May 2021, an online survey was widespread by 16 Italian MSCs. Frequencies, percentages and/or means and standard deviations were calculated to describe the sample. ANOVAs were performed to evaluate the effect of sociodemographic and clinical variables on overall pwMS' rating of MSC assistance. Results: 1670 pwMS completed the survey (67.3% women). During the pandemic, 88% did not change their disease modifying therapy schedule, and 89.1% reached their MSCs with no or little difficulties. Even if only 1.3% of participants underwent a tele-health follow-up visit with their MSC staff, the 80.1% believed that tele-health services should be improved regardless of pandemic. 92% of participants were satisfied of how their MSC took charge of their needs; ANOVAs revealed an effect of disease duration on pwMS' level of satisfaction on MSCs management during the pandemic. Conclusions: The results revealed an efficient MSCs response to Covid-19 pandemic and provided the basis for the implementing of tele-health services that would further improve the taking charge of patients, particularly those with longer disease, higher disability, and/or living far from their MSC

The management of neurological disease during the COVID-19 pandemia

In this current pandemic period, neurological disorders are the most devastating disease group among all disease groups considered which created the highest health burden for patients, their relatives, and healthcare workers which keeps increasing with aging world population. COVID-19 directly invades lungs, it also involves the nervous system. However, it is too early to know whether COVID-19 will have long-term impacts on patients with neurologic disease. The COVID-19 pandemic has changed people’s daily routines, and it all happened in a short period. Neurologists are affected negatively by the COVID-19 pandemic in a few key ways, including: a reduced ability on admission or transfer of critically ill neurologic patients. During these exceptional times,a huge need arose for neurologists in the frontline and expected to be aware of and conscious for diagnosing neurological complications of COVID-19. In this process, the use of telemedicine (teleneurology) in the field of neurology is a significant approach to evaluate patients. Telemedicine has been used as a platform for rehabilitation,neurological examinations,neuropsychologyand other specialty services. Management of neurological diseases such as Parkinson disease, multiple sclerosis, intracranial infections, epilepsy, dementia, headache, neuromuscular diseases, and stroke had been affected in this process. In this review article, the main goal is to discuss how the diagnosis, proper management of people with existing neurological disease during pandemia period

Addressing Health Disparities and Access in the Department of Neurology Outpatient Setting in the era of the COVID-19 Pandemic: A Quality Improvement Initiative

Neurology, a largely outpatient specialty, has joined many other fields in the endeavor of incorporating telemedicine.4,6,7 We present the results of analysis of the Epic Electronic Medical Record (EMR) of all outpatient visits from the Thomas Jefferson University Hospital Department of Neurology from 2019 to 2020 in order to identify areas of ethnic minority and geographic disparities with regards to usage of telemedicine. For our analyses, we have included Neurology patients across the General Neurology (JUP Neurology 909 Walnut NEU), Headache Center (HA), and Multiple Sclerosis Center (MS). Additionally, based on patient surveys from a subset of our outpatient population within General Neurology sampled over one week on a voluntary opt-in basis, we identified a need for further education about and introduction to the telemedicine process. We intend to outline plans for future intervention and analysis

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review

Our objective was to review the evidence for using technology to improve access to specialist care for patients with amyotrophic lateral sclerosis (ALS) and their carers. Medline, Google Scholar and the Cochrane library were searched for articles describing technology that enabled clinical care of patients with ALS or their carers where the patient/carer and clinician were not in the same location. Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure. One randomized controlled trial using telehealth in patients with respiratory failure including 22 patients with ALS was identified. While rates of hospitalization were reduced, overall mortality was unchanged and there were too few patients with ALS in the study to detect significant benefit. In conclusion, there is limited evidence to support the use of telemedicine or telehealth in the care of patients with ALS. Future research needs to develop an understanding of the key beneficial aspects of the traditional specialist ALS service and how these factors could be delivered using technology. Successful evaluation and implementation of technologies to facilitate access to specialist care will only be possible if all the relevant impacts of an intervention are understood and measured

Multiple Sclerosis Patient Management During the COVID-19 Pandemic: Practical Recommendations From the Portuguese Multiple Sclerosis Study Group (GEEM)

The spread of the COVID-19 pandemic has imposed significant challenges on healthcare provision, requiring changes in the conventional patient management, particularly in chronic diseases like multiple sclerosis (MS). To increase patient safety and reduce the risk of infection, while ensuring an appropriate and regular follow-up, tele-medicine gained prominence as a valid alternative to face-to-face appointments. However, the urgency of the implementation and the lack of experience in most MS centers led to "ad hoc" and extremely diverse approaches, which now merit to be standardized and refined. Indeed, while tele-consultation cannot fully replace face-to-face visits, it certainly can, and will, be incorporated as part of the routine care of MS patients in the near future. Bearing this in mind, the Portuguese Multiple Sclerosis Study Group (GEEM) has developed a set of recommendations for the usage of tele-medicine in the management of MS patients, both during the pandemic and in the future. The consensus was obtained through a two-step modified Delphi methodology, resulting in 15 recommendations, which are detailed in the manuscript.The consensus and the publication of this manuscript were supported by an educational grant from Novartis Portugal to the Grupo de Estudos de Esclerose Múltipla. These funds were used to pay the work of the consultancy MOAI, which set up the online questionnaire and helped with writing the summary of the meeting and the first draft of the consensus, and the publishing fee (article processing charge). The funding source had no role in the process and did not influence, by any means, the content of the consensus or the present manuscriptinfo:eu-repo/semantics/publishedVersio

Multiple Sclerosis Patient Management During the COVID-19 Pandemic: Practical Recommendations From the Portuguese Multiple Sclerosis Study Group (GEEM)

The spread of the COVID-19 pandemic has imposed significant challenges on healthcare provision, requiring changes in the conventional patient management, particularly in chronic diseases like multiple sclerosis (MS). To increase patient safety and reduce the risk of infection, while ensuring an appropriate and regular follow-up, tele-medicine gained prominence as a valid alternative to face-to-face appointments. However, the urgency of the implementation and the lack of experience in most MS centers led to "ad hoc" and extremely diverse approaches, which now merit to be standardized and refined. Indeed, while tele-consultation cannot fully replace face-to-face visits, it certainly can, and will, be incorporated as part of the routine care of MS patients in the near future. Bearing this in mind, the Portuguese Multiple Sclerosis Study Group (GEEM) has developed a set of recommendations for the usage of tele-medicine in the management of MS patients, both during the pandemic and in the future. The consensus was obtained through a two-step modified Delphi methodology, resulting in 15 recommendations, which are detailed in the manuscript.info:eu-repo/semantics/publishedVersio