Moving online: Experiences and potential benefits of digital dance for older adults and people with Parkinson's disease.

BACKGROUND: Dance provides a range of beneficial effects for older adults including individuals with age-related neurological conditions such as Parkinson's disease (PD). The COVID-19 pandemic accelerated the development of at-home dance programs delivered digitally through live and pre-recorded media, but little is known about how participants may engage with and benefit from these resources. OBJECTIVE: This study explored experiences and potential benefits of digital dance participation among healthy older adults and people with PD. METHODS: An online survey consisting of fixed-choice and open questions was designed in collaboration with dance program providers and distributed between June and November 2020. RESULTS: Healthy older adults (N = 149) and people with PD (N = 178) participating in at-home dance programs reported frequent engagement and a range of benefits. People with PD reported greater levels of motor (e.g., ease of movement, balance) than non-motor (e.g., energy, confidence) outcomes, while healthy older adults reported similar numbers of motor and non-motor outcomes. Positive outcomes were associated with the use of movement imagery during dance in both groups, while singing was associated with benefits in people with PD and vocalising was associated with benefits in older adults. At-home dance resources were found to offer convenience and flexibility, but participants missed the interaction, support, and routine provided by in-person classes. The majority expressed a preference to continue with both digital and in-person participation in the future. Qualitative analysis of participants' comments further revealed that digital participation could help to maintain connection and well-being, as well as identifying further considerations for improving accessibility and facilitating digital engagement. CONCLUSIONS: At-home dance appears to be accessible, engaging, and potentially beneficial for older adults and people with PD, although barriers to participation should be addressed. Digital resources will be increasingly important to enable cost-effective, large-scale provision of home-based therapeutic activities.

Dance at Home for People With Parkinson's During COVID-19 and Beyond: Participation, Perceptions, and Prospects.

Emerging evidence shows that dance can provide both physical and non-physical benefits for people living with Parkinson's disease (PD). The suspension of in-person dance classes during the COVID-19 pandemic necessitated a transition to remote provision via live and recorded digital media. An online survey explored accessibility of and engagement with home-based dance programs, as well as potential benefits and processes involved in participation. The survey was co-developed by researchers and dance program providers, with input from people with PD and physiotherapists. Responses were collected from 276 individuals, including 178 current users of home-based programs, the majority of whom were participating at least once per week. Among respondents not currently using digital resources, lack of knowledge and motivation were the primary barriers. Most participants (94.9%) reported that home based practise provided some benefits, including physical (e.g., balance, posture) and non-physical (e.g., mood, confidence) improvements. Participants valued the convenience and flexibility of digital participation, but noted limitations including reductions in social interaction, support from instructors and peers, and motivation. There was a strong preference (70.8%) for continuing with home-based practise alongside in-person classes in the future. The results indicate that at-home dance is accessible and usable for people with PD, and that some of the previously-reported benefits of dance may be replicated in this context. Digital dance programs will likely remain a key element of future provision for people with PD, and the present findings will inform further development of resources and research into mechanisms and outcomes of home-based dance participation.

Dance as Lifeline: Transforming Means for Engagement and Connection in Times of Social Isolation.

Over the past 20 years, dance has emerged as a safe, effective, and evidence-based community intervention that helps thousands of people living with Parkinson's disease around the globe maintain well-being and improve quality of life. From its initial emergence to the present, COVID-19 has posed fundamental challenges to people living with Parkinson's, forcing them to balance the need and desire to stay active and socially connected with the requirement to adhere to strict shelter-at-home orders. As cities and towns worldwide began shutting down in early 2020, people living with Parkinson's found themselves unable to access live dance activities that had provided consistent, reliable physical support; joyful cognitive stimulation; emotional connection; and social engagement. Government sanctioned closures and stay-at-home orders increased the potential for apathy, isolation, anxiety, and stress-factors that are already heightened in people with Parkinson's. COVID-19 also exacerbated disparities based on race, language, socioeconomic background, and age, inequities already present in the Parkinson's community and in Parkinson's-focused dance programming. In this article, the authors provide a description and analysis of ways one dance for Parkinson's program addressed multiples challenges through three key initiatives: online group classes in English and Spanish, telephone-based resources for people without internet access, and robust online training opportunities for teaching artists. The authors outline ways in which the pandemic has increased the inclusive nature of dance for Parkinson's programming and suggest that changes implemented during the pandemic will permanently alter program delivery for the better when it is safe to restore group classes in community settings.

Development and Application of a Patient Group Engagement Prioritization Tool for Use in Medical Product Development.

INTRODUCTION: Patient group engagement is increasingly used to inform the design, conduct, and dissemination of clinical trials and other medical research activities. However, the priorities of industry sponsors and patient groups differ, and there is currently no framework to help these groups identify mutually beneficial engagement activities. METHODS: We conducted 28 qualitative, semi-structured interviews with representatives from research sponsor organizations (n = 14) and patient groups (n = 14) to determine: (1) how representatives define benefits and investments of patient group engagement in medical product development, and (2) to refine a list of 31 predefined patient group engagement activities. RESULTS: Patient group and sponsor representatives described similar benefits: engagement activities can enhance the quality and efficiency of clinical trials by improving patient recruitment and retention, reduce costs, and help trials meet expectations of regulators and payers. All representatives indicated that investments include both dedicated staff time and expertise, and financial resources. Factors to consider when evaluating benefits and investments were also identified as were suggestions for clarifying the list of engagement activities. DISCUSSION: Using these findings, we refined the 31 engagement activities to 24 unique activities across the medical product development lifecycle. We also developed a web-based prioritization tool ( https://prioritizationtool.ctti-clinicaltrials.org/ ) to help clinical research sponsors and patient groups identify high-priority engagement activities. Use of this tool can help sponsors and patient groups identify the engagement activities that they believe will provide the most benefit for the least investment and may lead to more meaningful and mutually beneficial partnerships in medical product development.

A walking dance to improve gait speed for people with Parkinson disease: a pilot study.

Aim: To determine the effectiveness of a targeted dance intervention to improve walking speed for people with Parkinson disease (PD) by increasing motor motivation. Materials & methods: 11 participants with PD participated in a 6-week pilot study in which they learned a contemporary dance composed of walking steps and designed to mimic everyday walking. 1 h classes occurred twice-weekly. Results: Pre- and post-intervention assessments revealed a significant increase in gait speed (t9 = 3.30; p = 0.009), cadence (t9 = 2.345; p = 0.044), and stride length (t9 = 3.757; p = 0.005), and a significant decrease (improvement) in single support time variability (t9 = -2.744; p = 0.022). There were no significant changes in other measures of gait variability nor in motor symptoms, mood and anxiety, extent of life-space mobility, or quality of life. No adverse events were reported. Conclusion: Joywalk provides preliminary evidence that a targeted physical intervention for people with PD may specifically counter bradykinesia.

Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey.

OBJECTIVE: Patient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed. METHODS: Individuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions. RESULTS: Survey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non-patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non-patient group respondents (all p< .01). CONCLUSIONS: Despite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.

Resuscitation of the pregnant patient: What is the effect of patient positioning on inferior vena cava diameter?

STUDY OBJECTIVE: Patients in the third trimester of pregnancy presenting to the emergency department (ED) with hypotension are routinely placed in the left lateral tilt (LLT) position to relieve inferior vena cava (IVC) compression from the gravid uterus thereby increasing venous return. However, the relationship between patient position and proximal intrahepatic IVC filling has never assessed directly. This study set out to determine the effect of LLT position on intrahepatic IVC diameter in third trimester patients under real-time visualization with ultrasound. METHODS: This prospective observational study on the labor and delivery floor of a large urban academic teaching hospital enrolled patients between 30 and 42 weeks estimated gestational age from August 2011 to March 2012. Patients were placed in three different positions: supine, LLT, and right lateral tilt (RLT). After the patient was in each position for at least 3 min, IVC ultrasound using the intercostal window was performed by one of three study sonologists. Maternal and fetal hemodynamics were also monitored and recorded in each position. RESULTS: A total of 26 patients were enrolled with one excluded from data analysis due to inability to obtain IVC measurements. The median IVC maximum diameter was 1.26 cm (95% confidence interval [CI] 1.13-1.55) in LLT compared to 1.13 cm (95% CI 0.89-1.41) in supine, p=0.01. When comparing each individual patient's LLT to supine measurement, LLT lead to an increase in maximum IVC diameter in 76% (19/25) of patients with the average LLT measurement 29% (95% confidence interval 10-48%) larger. Six patients had the largest maximum IVC measurement in the supine position. No patients experienced any hemodynamic instability or distress during the study. CONCLUSION: IVC ultrasound is feasible in late pregnancy and demonstrates an increase in diameter with LLT positioning. However, a quarter of patients had a decrease in IVC diameter with tilting and, instead, had the largest IVC diameter in the supine position suggesting that uterine compression of the IVC may not occur universally. IVC assessment at the bedside may be a useful adjunct in determining optimal positioning for resuscitation of third trimester patients.