Delivering Multidisciplinary Rehabilitation Care in Parkinson's Disease: An International Consensus Statement.

BACKGROUND: Parkinson's disease (PD) is a complex neurodegenerative disorder impacting everyday function and quality of life. Rehabilitation plays a crucial role in improving symptoms, function, and quality of life and reducing disability, particularly given the lack of disease-modifying agents and limitations of medications and surgical therapies. However, rehabilitative care is under-recognized and under-utilized in PD and often only utilized in later disease stages, despite research and guidelines demonstrating its positive effects. Currently, there is a lack of consensus regarding fundamental topics related to rehabilitative services in PD. OBJECTIVE: The goal of the international Parkinson's Foundation Rehabilitation Medicine Task Force was to develop a consensus statement regarding the incorporation of rehabilitation in PD care. METHODS: The Task Force, comprised of international multidisciplinary experts in PD and rehabilitation and people directly affected by PD, met virtually to discuss topics such as rehabilitative services, existing therapy guidelines and rehabilitation literature in PD, and gaps and needs. A systematic, interactive, and iterative process was used to develop consensus-based statements on core components of PD rehabilitation and discipline-specific interventions. RESULTS: The expert-based consensus statement outlines key tenets of rehabilitative care including its multidisciplinary approach and discipline-specific guidance for occupational therapy, physical therapy, speech language pathology/therapy, and psychology/neuropsychology across all PD stages. CONCLUSIONS: Rehabilitative interventions should be an essential component in the comprehensive treatment of PD, from diagnosis to advanced disease. Greater education and awareness of the benefits of rehabilitative services for people with PD and their care partners, and further evidence-based and scientific study are encouraged.

Dancing for Parkinson's Disease Online: Clinical Trial Process Evaluation.

Background: Dancing is an engaging physical activity for people living with Parkinson's disease (PD). We conducted a process evaluation for a PD trial on online dancing. Methods: "ParkinDANCE Online" was co-produced by people with PD, healthcare professionals, dance instructors, and a PD organisation. The evaluation mapped the following inputs: (i) stakeholder steering group to oversee program design, processes, and outcomes; (ii) co-design of online classes, based on a research evidence synthesis, expert advice, and stakeholder recommendations; (iii) trial fidelity. The key activities were (i) the co-design of classes and instruction manuals, (ii) the education of dance teachers, (iii) fidelity checking, (iv) online surveys, (v) and post-trial focus groups and interviews with participants. The outputs pertained to: (i) recruitment, (ii) retention, (iii) adverse events, (iv) fidelity, (v) protocol variations, and (vi) participant feedback. Results: Twelve people with PD, four dance instructors and two physiotherapists, participated in a 6-week online dance program. There was no attrition, nor were there any adverse events. Program fidelity was strong with few protocol variations. Classes were delivered as planned, with 100% attendance. Dancers valued skills mastery. Dance teachers found digital delivery to be engaging and practical. The safety of online testing was facilitated by careful screening and a home safety checklist. Conclusions: It is feasible to deliver online dancing to people with early PD.

Rating Scales for Medication Adherence in Parkinson's Disease: A Systematic Review for Critique and Recommendations.

Background: Behaviors interfering with medication adherence (MA) are common and often complex in Parkinson's disease (PD), negatively affecting quality of life and undermining the value of clinical trials. The Clinical Outcome Assessments (COA) Scientific Evaluation Committee of the International Parkinson and Movement Disorder Society (MDS) commissioned the assessment of MA rating scales to recommend the use in PD. Objective: Critically review the measurement properties of rating scales used to assess MA in PD and to issue recommendations. Methods: We conducted systematic review across seven databases to identify structured scales to assess MA in PD. Eligible studies were critically appraised for methodological quality using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) Risk of Bias checklist. Standards for good measurement properties of the selected scales were summarized narratively using the COSMIN, the MDS-COA Committee methodology, the World Health Organization concepts, and the Ascertaining Barriers to Compliance taxonomy. The certainty of the evidence was determined using the modified Grades of Recommendation, Assessment, Development and Evaluation approach with final assessments (highest to lowest) of "Recommended," "Suggested" and "Listed". Results: Of the nine reviewed scales, none met the designation "Recommended". The Morisky Medication Adherence Scale (MMAS-8); Beliefs Related to Medications Adherence questionnaire, Beliefs about Medication Questionnaire, Medication Adherence Rating Scale, and Satisfaction with Information on Medicines Scale were rated "Suggested". Conclusions: We suggest further work focusing on resolving the problems of the suggested scales or developing a new scale meeting all required criteria.

Parkinson's disease and Covid-19: Is there an impact of ethnicity and the need for palliative care.

Under the traditional models of care for People with Parkinson's Disease (PD, PwP), many of their needs remain unmet and a substantial burden of motor and non-motor symptoms they experience may not be tackled sufficiently. An introduction of palliative care (PC) interventions early in the course of PD offers profound benefits: it may improve quality of life of patients, their families and caregivers through the prevention and relief of medical symptoms, while, at the same time, emphasizing their emotional needs and spiritual wellbeing, establishing goals of care, and engaging in the advance care planning (ACP). The ongoing Coronavirus Disease 2019 (Covid-19) pandemic poses an unprecedented set of challenges for PwP and has in many ways (both directly and indirectly) magnified their suffering, thus rapidly raising the demand for PC interventions. Covid-19, as well as the repercussions of prolonged mobility restrictions and limited health-care access might exacerbate the severity of PD motor symptoms and interact negatively with a range of non-motor symptoms, with a detrimental effect on quality of life. Greater motor disability, higher amount of levodopa-induced motor fluctuations with an increased daily off-time, fatigue, anxiety, depression, sleep disturbances, pain and worsening of cognitive complaints might dominate the clinical presentation in PwP during the Covid-19 pandemic, alongside raising psychological and spiritual concerns and anticipatory grief. Here, we aim to provide a foundation for pragmatic and clinically orientated PC approach to improve quality of life and relieve suffering of PwP in the context of the current, ongoing Covid-19 pandemic.

Age Cutoff for Early-Onset Parkinson's Disease: Recommendations from the International Parkinson and Movement Disorder Society Task Force on Early Onset Parkinson's Disease.

Background: Early-onset Parkinson's disease (EOPD)/young-onset Parkinson's disease (YOPD) is defined as Parkinson's disease (PD) with an age at onset (AAO) after age 21 years but before the usual AAO for PD. Consensus is lacking, and the reported maximal age for EOPD/YOPD has varied from 40 to 60 years, leading to a lack of uniformity in published studies and difficulty in harmonization of data. EOPD and YOPD have both been used in the literature, somewhat interchangeably. Objective: To define the nomenclature and AAO cutoff for EOPD/YOPD. Methods: An extensive review of the literature and task force meetings were conducted. Conclusions were reached by consensus. Results: First, the literature has seen a shift from the use of YOPD toward EOPD. This seems motivated by an attempt to avoid age-related stigmatization of patients. Second, in defining EOPD, 56% of the countries use 50 or 51 years as the cutoff age. Third, the majority of international genetic studies in PD use an age cutoff of younger than 50 years to define EOPD. Fourth, many studies suggest that changes in the estrogen level can affect the predisposition to develop PD, making the average age at menopause of 50 years an important factor to consider when defining EOPD. Fifth, considering the differential impact of the AAO of PD on professional and social life, using 50 years as the upper cutoff for the definition of EOPD seems reasonable. Conclusions: This task force recommends the use of EOPD rather than YOPD. It defines EOPD as PD with AAO after 21 years but before 50 years.

Rating scales for medication adherence in people living with Parkinson's disease: a systematic review protocol.

OBJECTIVE: The objective of the review is to evaluate the measurement properties of rating scales that have been used to assess the components of medication adherence in patients with Parkinson's disease. INTRODUCTION: Drug therapy is a central strategy in the control of Parkinson's disease symptoms. Measuring behaviors related to medication adherence in patients with Parkinson's disease is vital to understanding the therapeutic response. Consequently, it is necessary to define which instrument offers the most reliable and valid screening. INCLUSION CRITERIA: This review will consider studies in English and Portuguese using structured rating scales to assess medication adherence in people with Parkinson's disease. Studies including data from patients with different diseases in addition to Parkinson's disease will be included only if data are clearly available for each disorder covered. Study protocols, letters to the editors, reviews, and studies with clinical judgment scales but no operationally defined anchor points will be excluded. METHODS: A three-step search strategy will be utilized. Databases will include MEDLINE (PubMed), LILACS (BVS Portal), PsycINFO (APA PsycNet), CINAHL (EBSCO), Web of Science (Clarivate Analytics), Embase, and Scopus (Elsevier). The search strategy will be presented using a PRISMA flow diagram. Eligible studies will be critically appraised for methodological quality using the COSMIN Risk of Bias checklist. Criteria for good measurement properties of the selected scales will be summarized narratively using COSMIN, the Movement Disorder Society Rating Scale Program Committee methodology, the World Health Organization concepts, and the ABC taxonomy of medication adherence. The certainty of the evidence will be determined using the modified GRADE recommendations. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO (CRD42021211099).

Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians.

BACKGROUND: Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. OBJECTIVE: We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. METHODS: A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e-mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. RESULTS: Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle- and high-income countries. Government-funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty-nine percent worked in multidisciplinary teams. The majority endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. CONCLUSIONS: The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS. © 2021 International Parkinson and Movement Disorder Society.

Online Dance Therapy for People With Parkinson's Disease: Feasibility and Impact on Consumer Engagement.

BACKGROUND: Therapeutic dancing can be beneficial for people living with Parkinson's disease (PD), yet community-based classes can be difficult to access. OBJECTIVE: To evaluate the feasibility and impact of online therapeutic dancing classes for people in the early to mid-stages of PD. METHODS: Co-produced with people living with PD, physiotherapists, dance teachers and the local PD association, the 'ParkinDANCE' program was adapted to enable online delivery during the COVID-19 pandemic. Participants completed 8 one-hour sessions of online therapeutic dancing. Each person was assigned their own dance teacher and together they selected music for the classes. A mixed-methods design enabled analysis of feasibility and impact. Feasibility was quantified by attendance and adverse events. Impact was determined from individual narratives pertaining to consumer experiences and engagement, analysed with qualitative methods through a phenomenological lens. RESULTS: Attendance was high, with people attending 100% sessions. There were no adverse events. Impact was illustrated by the key themes from the in-depth interviews: (i) a sense of achievement, enjoyment and mastery occurred with online dance; (ii) project co-design facilitated participant engagement; (iii) dance instructor capabilities, knowledge and skills facilitated positive outcomes; (iv) music choices were key; and (v) participants were able to quickly adapt to online delivery with support and resources. CONCLUSIONS: Online dance therapy was safe, feasible and perceived to be of benefit in this sample of early adopters. During the pandemic, it was a viable form of structured physical activity. For the future, online dance may afford benefits to health, well-being and social engagement.

The impact of COVID-19 on palliative care for people with Parkinson's and response to future pandemics.

Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities.Areas covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly - as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics.Expert opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms - both in the short- and long-term, (Long-COVID) and calls for specific, personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.