Abstract
Background:
Telemedicine is increasingly used for Parkinson disease, but the perspectives of persons with Parkinson disease have not been systematically assessed.
Methods:
We therefore conducted a national online survey, and 781 individuals with Parkinson disease responded.
Results:
Of these, 76% indicated high interest, and 29% reported prior telemedicine experience. The top advantages included access to specialists (62%), convenience (60%), and time savings (59%). The most common disadvantages were the lack of hands-on care (69%), lack of intimacy (43%), and technical difficulties (37%).
Conclusions:
In this non-representative sample, interest in telemedicine was high but tempered by the concern for loss of high touch care.
INTRODUCTION
Parkinson disease is the fastest growing neurological disorder in the world [1]. Currently, in the United States (U.S.), approximately 900,000 individuals have Parkinson disease and 60,000 new cases are reported each year [2–6]. Unfortunately, many with the disease lack access to care resulting in worse health outcomes. In high-income countries like the U.S., over 40% of individuals with the condition do not see a neurologist [2]. One study of nearly 25,000 Medicare beneficiaries with Parkinson disease, found that those who did receive regular Parkinson disease care (58%) had fewer falls, lower rates of skilled nursing facility use, and lower mortality [2]. Moreover, in a study of the prevalence of Parkinson disease in Asia, results of door-to-door surveys indicate that between 20–80% of those identified with Parkinson disease had never been previously diagnosed [7].
Proliferation of mobile technology and internet access, has provided novel opportunities in the realm of Parkinson disease care. Specifically, through utilization of virtual visits, telemedicine has the potential to increase access to care for individuals with Parkinson disease who would not otherwise have the opportunity or ability to see a specialist [8–13]. Telemedicine, using simple web-based videoconferencing, is an increasingly feasible and valuable way to care for individuals with Parkinson disease [8–13]. Although interest and use of telemedicine are increasing, large scale efforts to assess the perspective of individuals with Parkinson disease on this care model are lacking. Therefore, we conducted an on-line survey of individuals with Parkinson disease to solicit their interest, perceived benefits, and perceived limitations of telemedicine.
METHODS
Instrument
We created an online survey using Research Electronic Database Capture (REDCap), a secure web application for building and managing online surveys and databases. All study protocol was reviewed and approved by the Research Subjects Review Board (RSRB) at the University of Rochester. The survey (Supplementary Material) included 23 items including questions about the individuals’ previous experience with telemedicine, thoughts on telemedicine advantages and disadvantages, internet use, current Parkinson disease care, and amount of time spent traveling to care appointments. The online survey used branching logic to expedite the process, and was accessed by participants via a REDCap-generated link.
The survey did not collect any identifying information. Participants were allowed to skip any questions they did not feel comfortable answering, with the exception of the first question which asked whether the individual has been diagnosed with Parkinson disease. A “No” response to this question generated an automatic stop, rendering the survey complete, as we were only interested in the opinions of individuals with Parkinson disease.
Recruitment
Recruitment for the survey began in September 2017 and ended in December 2017. Survey participants were reached nationally through four means: the University of Rochester’s neurology study interest registry, the (National) Parkinson Foundation, the Davis Phinney Foundation, or through a Facebook page supporting a university-based telemedicine program. The Parkinson Foundation and the Davis Phinney Foundation sent out the survey information letter and link through their social media platforms and newsletters. Participants were given the option to provide an email address to be entered into a raffle for a $100 Amazon gift card.
Statistical analysis
All analyses were performed using SAS v9.4. Summary statistics (i.e., proportions, mean, standard deviation) were used to describe the demographic and technology-based experience of this cohort as well as their interest, experience, and perspectives in virtual visits.
RESULTS
We received responses from 781 individuals with clinically diagnosed Parkinson disease who answered at least one survey item. Participants were majorly white (90%), college graduates (69%), and living in a private residence (88%). The mean (standard deviation) age of participants is 68.5 (8.7) and 48% were women.
The large majority of respondents indicated being interested or very interested in seeing a Parkinson disease specialist via telemedicine (77%). The survey identified the top advantages and disadvantages of virtual visits for Parkinson disease (Table 2). The top three selected responses for advantages of virtual visits are “ability to see a Parkinson disease specialist (62%),” “more convenient than going to the medical office” (60%), and “saving time by not having to travel” (59%). The top three selected responses for disadvantages of virtual visits are “not being able to have the clinician perform a hands-on physical exam (69%),” “lack of intimacy and/or not developing a close relationship with the clinician (43%),” and “having issues with the technology during the visit (37%).” The majority of participants use internet at home (98%) and more than half have made a video call before (61%).
Demographic and technology characteristics of the study population
n = 781; *Results are percentages unless otherwise indicated.
Virtual visits experience and perspectives
n = 781.
The majority of participants (63%) see a movement disorders specialist for their Parkinson disease care and see their provider at least twice a year (79%). Less than half of the participants (39%) report that they drive themselves to their Parkinson disease care appointments and 37% of participants report having their spouse/significant other drive them to their appointments. The average time it takes participants to get to their care appointments (one-way) is just over one hour (66 minutes). We asked participants if the cost of a virtual visit and an in-person visit were the same, which they would prefer. Many prefer an in-person visit (43%) while some report preferring a virtual visit (25%) or no preference (23%).
DISCUSSION
The objective of this study is to assess the perspectives of Parkinson disease patients on the use of telemedicine for care delivery. Our findings suggest that the majority of patients are willing and interested in adopting telemedicine to manage their Parkinson disease. Results indicate that patients see telemedicine as a convenient and resource saving option for accessing Parkinson disease specialists and care. Conversely, patients also feel as though the potential for technical difficulties, and lack of intimacy and immediacy could create barriers to receiving the best, necessary care. Our results confirm past findings related to perceptions and attitudes towards telemedicine among Parkinson disease patients [6–8]. The present study however, was the first large-scale, empirical effort to assess such perspectives. It is important to note that the use of telemedicine in Parkinson disease care may still present unique practical and economic challenges for providers and patients alike when compared to a face-to-face consultation. We argue however, that the implementation of telemedicine may be specifically beneficial for individuals with Parkinson disease who would not otherwise be able to see a specialist in person due to distance or diminished mobility.
The study has several limitations. First, we recruited our sample and collected our data via an online survey. We can therefore deduce that our average participant possessed a certain degree of comfort and experience with technology use that may have influenced their comfort and willingness to adopt telemedicine, thereby hindering the generalizability of these findings. Future research should endeavor to recruit participants who are not as active online in order to assess the perspectives of those who may be less technologically inclined. Second, our sample consisted of individuals located in the U.S. who were predominantly white and educated with an average age of 68.5 years old. As technology use and adoption is influenced by various demographic and socio-economic, and cultural factors [14, 15], future research should examine a more diverse sample in order to develop a more comprehensive and robust understanding of Parkinson disease patients’ willingness to adopt telemedicine across the U.S. and abroad. Third, as our survey relied on self-report from individuals with Parkinson disease, we cannot determine the extent to which clinical parameters, such as severity of the disease, affect the practicality of telemedicine. Finally, our survey was delivered through email via multiple online registries as well as various social media platforms. As we do not know how many individuals received the survey through our various distribution channels, we cannot determine a response rate for this study.
Despite the limitations, this study is a meaningful step towards assessing Parkinson disease patients’ views toward the use of telemedicine. By ascertaining the unique perspectives of Parkinson disease patients regarding telemedicine, researchers may better tailor telemedicine to the particular needs and preferences of this patient community. Thus, these findings may serve as a basis for the development and deployment of large, scalable, community-based interventions to effectively implement telemedicine to connect individuals with Parkinson disease and care providers.
CONFLICT OF INTEREST
Dr. Dorsey is an advisor to and has stock options in Grand Rounds and is a compensated consultant to 23andMe, AbbVie, Biogen, Clintrex, GlaxoSmithKline, MC10, MedAvante, Shire, Sunovion, Teva, and Voyager Therapeutics.
Footnotes
ACKNOWLEDGMENTS
Research reported in this article was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (DI-1605-35338) as well as by the University of Rochester CTSA Award (TL1 TR00200) from the National Center for Advancing Translational Sciences of the National Institutes of Health. The statements and views presented in this article are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee, or the National Institutes of Health.
