A New Era: The Growth of Video-Based Visits for Remote Management of Persons with Parkinson’s Disease

INTRODUCTION

Over 6 million individuals worldwide have Parkinson’s disease (PD) [1] and the prevalence is rapidly increasing, with the number affected by PD expected to double by 2040 [2]. Neurologist care improves outcomes for persons with PD [3, 4] yet access to neurologist care is limited in many areas [4, 5] due to the uneven geographic distribution of neurologists [5, 6]. Access to care is also limited by PD-related disability [7] and driving impairment [8], which can impede travel to clinic. A better model of care is needed in order to meet the growing demand for neurologist care for persons with PD. Telemedicine, which in-cludes the use of real-time video-conferencing bet-ween healthcare providers and persons with PD for clinical care (video-based visits), represents one such advancement in care. By bringing care directly into the home, video-based visits can improve access to care in a patient-centered manner that minimizes the burden on persons with PD and their care partners. The ongoing COVID-19 pandemic, which has resulted in the death of over 1,400,000 people worldwide [9], has created new and urgent impetus to identify alternatives to traditional in-person care. This is particularly relevant for those with advanced PD-associated frailty who may have a higher COVID-19 mortality rate [10]. Here, we review the use of video-based visits for the management of persons with PD and future directions. The review focuses on North America and provides a high-level overview of experiences worldwide.

VIDEO-BASED VISITS IN THE CARE OF PERSONS WITH PD

The largely visual nature of the PD examination lends itself well to video-based visits. In-home video-based visits are feasible with visit completion rates exceeding 90% (Table 1) [11, 12]. A modified version of the Movement Disorder Society –Unified Parkinson Disease Rating Scale (MDS-UPDRS) motor examination, excluding assessment of rigidity and postural instability, can be administered remotely [13]. In an analysis of more than 550 video-based PD research visits, 98% of modified MDS-UPDRS motor items were successfully rated [14]. While agreement between video-based and in-person modified MDS-UPDRS motor scores is only moderate [15], this is unlikely to affect clinical care. Common cognitive assessments, including the Montreal Cognitive Assessment, can be administered remotely in PD [16], however, validation is needed. The inability to obtain a complete neurological examination may limit the utility of video-based visits in the care of individuals without an established diagnosis.

Video-based visits are well-received by persons with PD with high overall satisfaction rates (94–97%) [11, 12] and particular appreciation for the convenience and comfort afforded [17]. Video-based visits are also associated with substantial patient time- and travel-savings [11, 12]. Patient interest is correspondingly high; in a survey-based study of over 700 persons with PD, 77% indicated interest in video-based visits with a PD specialist [18]. Pre-COVID, physician satisfaction with [12] and enthusiasm for video-based visits was more tempered, with concerns relating to the technical aspects of visits [17]. Similarly, only 40% of local physicians (n = 89) for participants in a trial of video-based visits for PD indicated that they would recommend video-based visits with a PD specialist, potentially reflecting poor communication of recommendations [19]. While concerns regarding the ability to establish a personal connection have been raised, in many ways video-based visits afford greater intimacy and insight into a patient’s life.

Beyond potentially improving access, video-based visits can be used to deliver tele-rehabilitation services (discussed elsewhere in this special issue), provide psychiatric care, and manage advanced therapies. Follow-up video-based psychiatry care for persons with PD is feasible, improves access to psychiatric care, and is associated with high rates of satisfaction [20]. In a randomized, controlled trial of telephone-based cognitive behavioral therapy (CBT) plus usual care versus usual care for depression in PD (n = 72), the treatment group demonstrated a significant improvement in depressive symptoms at treatment end that was maintained long-term [21]. A study of video-based CBT for PD depression has been completed but not yet published (clinicaltrials.gov NCT02475954). The feasibility of video-based CBT for PD anxiety (n = 9) was demonstrated in a recent pilot study [22]. While many procedures cannot be performed remotely, video-based visits can facilitate the management of advanced therapies, including initial titration of levodopa-carbidopa intestinal gel [23], pre-surgical screening of deep brain stimulation candidates [24], and adjustments in deep brain stimulation settings [25].

However, large studies examining the value of usual care plus video-based visits with PD specialists have failed to show an improvement in quality of life. In a large cohort study, PD participants (n = 277) received a one-time in-home video-based visit with a PD specialist with no significant improvement in quality of life at 6 months [11]. Similarly, in a large, randomized controlled study, PD participants (n = 195) were randomized to usual care versus usual care plus video-based visits with a PD specialist and no between group differences in change in quality of life, caregiver burden, quality of care, or healthcare utilization from baseline to month 12 were identified [12]. The lack of improvement in quality of life may have reflected high baseline access to PD specialist care (59–73%) in the tested cohort and reliance on local physicians to implement recommendations.

COVID-19 PROPELLED RAPID CHANGES IN THE TELEMEDICINE PRACTICE LANDSCAPE

While some established telemedicine networks existed pre-COVID (e.g., Ontario Telemedicine Network, U.S. Department of Veterans Affairs), variable rates of internet access, licensure requirements, and reimbursement barriers limited widespread implementation of video-based visits in the care of persons with PD. In the U.S., only 59% of adults ≥65 years old have home broadband access; Black and Hispanic/Latino individuals and those with lower edu-cation levels, lower income levels, and rural residence are less likely to have access [26]. Pre-COVID, Medicare, which insures roughly 60 million Americans over age 65 [27], did not reimburse for in-home video-based visits for persons with PD [28] and only approximately 40% of states allowed for Medicaid reimbursement for in-home video-based visits [29]. The COVID-19 pandemic has forced the rapid adoption of video-based visits [30] and exponential growth of publications (n = 59 posted on PubMed in 2020). Telemedicine visits in March of 2020 surged 50% and Medicare primary care video-based visits increased from 1% in February to nearly 50% in April 2020 [31, 32]. Spurred by necessity, cha-nges in policy, infrastructure, technology, and social opinion have resulted in broad changes in the tele-medicine practice landscape [33]. The International Parkinson and Movement Disorders Society (MDS) Telemedicine Study Group highlighted the need for ongoing updates of telemedicine guidelines and regulatory policies worldwide and has developed a pra-ctical guide for telemedicine visits [34, 35].

WORLDWIDE TELEMEDICINE EXPERIENCE

Considering that telemedicine is highly dependent on the availability of technology and country-specific policies, adoption of telemedicine care delivery has been very variable across the globe. Regarding the care of advanced PD in the setting of COVID-19, Fasano et al reported international clinicians’ overall lack of preparedness to deliver virtual care and limited telemedicine platforms [47]. The authors highlighted the need for rapid adoption of remote care delivery models and expanded use of digital technology for remote patient monitoring, while providing algorithms to remotely care for deep brain stimulation, levodopa/ carbidopa intestinal gel infusions and other advanced therapies. Similarly, the Digital Technologies, Web and Social Media Study Group of the Italian Society of Neurology published a review of remote PD care delivery in the setting of COVID-19 pandemic that includes a battery of tests for telemedicine visits, patient reported outcomes and smartphone applications [48]. Additionally, the MDS Telemedicine Study Group developed a practical guide on how to implement telemedicine visits, though it does not address regional policies and technology limitations [35].

FUTURE DIRECTIONS

Action needs to be taken to ensure that the immense strides in adopting telemedicine for neurologic care during the COVID-19 pandemic are sustainable, and to improve access to care and quality of care (Fig. 1).

OPEN IN VIEWER

Fig. 1

Future Directions for Video-Based Visits for PD Care.

CONCLUSIONS

Video-based visits uniquely provide what has been aptly described as “the four C’s” for PD patients: care, convenience, comfort, and confidentiality [56]. The COVID-19 pandemic has added a 5^th C, contagion, which accelerated the adoption of video-based visits through changes in policy and regulation, precipitous advancement of technology and infrastructure, increased patient interest, and greater acceptance of this novel care model. We must now deliver on the promise of video-based visits to improve access to, and further enhance the quality of PD care. Adv-ocating for continued policy changes and equitable access, as well as establishing best practices for video-based care, must be a top priority for PD providers and health systems world-wide. Telemedi-cine offers a unique opportunity to propel PD patient care into the 21^st century with a novel philosophy and platform of patient-centric care delivery. However, achieving this ambitious but realistic goal will require ongoing collaborative efforts between the international movement disorders community, policy makers, and patients, extending beyond the COVID-19 crisis.