Parkinson’s disease (PD) is a progressive, neurodegenerative disorder that is characterised by disordered movement including bradykinesia (slowness of movement), resting tremor, rigidity, and postural instability [
As the second most common neurodegenerative disorder, it has been projected that by 2030 the prevalence of PD will have, at a minimum, doubled since 2005 in the most populous nations [
Given the resource intensive nature of frequent face-to-face appointments for clients and services, the remote monitoring of PD symptoms has been explored [
Abdolahi et al. (2013) conducted a study to compare whether administering the UPDRS without the items that require physical interaction would make a significant difference to trial outcomes [
The purpose of this study was to evaluate the feasibility of remotely assessing the symptoms of PD in a person’s own home using readily available technology, specifically a webcam and a freely available Internet-based videoconferencing option, such as Skype™ or Google Hangouts without a preparatory home visit. It also investigated the participants’ and clinical raters’ experiences of using Internet-based assessment and any limitations that were encountered.
This study was conducted with the approval of the UnitingCare Health Human Research Ethics Committee (number 1312) and Behavioural and Social Sciences Ethical Review Committee, The University of Queensland (number 2013000913). Participants were recruited through research networks and PD organisations. The attrition rate was zero. The participant inclusion criteria included a diagnosis of PD, the availability for two appointments one to two weeks apart, and access to suitable technology. Participants who could not be seen face-to-face for the first appointment were excluded from this study. The purpose and procedures of this study were explained to each participant in writing prior to obtaining written consent. Participants were not paid to participate in the study; however the cost of parking for clinic attendance for the first appointment was covered.
A demographic questionnaire was used to gather information about the participant’s age, gender, marital status, ethnicity, care received, living situation, postcode, comorbidities, their PD diagnosis, and medication. The Movement Disorder Society Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) was used to measure the symptomatology experienced by participants, initially face-to-face and then via video conferencing [
Feedback forms were used to collect information about participant experience and concerns regarding their experience of using Internet-based videoconferencing to assess their symptoms. Open and closed questions were used in the feedback form to develop an understanding of the participant’s perception of how accurately videoconferencing reflected their symptoms, experiences, and concerns about the process and perceived advantages. Closed questions such as “do you think monitoring the symptoms in this way accurately reflects your current functioning?” were followed by open questions of “can you explain why?” to allow participants to elaborate on their responses. The questions were purpose-designed for the feedback forms and were developed from initial consumer consultation in the development of the project. Clinical rater feedback was collected by asking raters to provide written reflection on their experiences of assessing participants through videoconference, immediately after each session ended.
Videoconferencing software programs that were readily available, user friendly, and free to download and use, including Skype or Google Hangouts, were options for the videoconferencing part of the study. As preparatory home visits were not conducted, participants used the computers and webcams that they already had at home when engaging in the videoconferencing assessment.
This research was designed as an exploratory, feasibility study. Four clinical raters, consisting of qualified occupational therapists and physiotherapists, were involved in data collection. Clinical raters completed the MDS-UPDRS training video and also observed at least one session with an experienced rater. To reduce discrepancies between assessments, the same clinical rater was allocated to conduct a participant’s face-to-face and videoconference assessment where possible. During the first appointment, the participants filled in the demographic questionnaire and had their PD symptomology assessed in person, either in their home or within a private clinic room, using the MDS-UPDRS. At the end of the face-to-face session, the participants were given an envelope containing the MDS-UPDRS self-report questionnaire, a feedback form, and return envelope, for their videoconference assessment. An Internet-based videoconference appointment was arranged for approximately one to two weeks later at the same time since dopaminergic medication so that the effect of medications would be consistent and because participants were expected to stay relatively stable over the one- to two-week period.
In the second session, either Skype or Google+ Hangouts was used to conduct the videoconference assessment, with the participant using their home computer and webcam. The clinical rater, located remotely from the participant, scored the MDS-UPDRS, excluding the postural stability and rigidity testing. Participants were given the option of independently completing the self-report components or answering the questions verbally via videoconferencing if writing was burdensome given their symptoms. For some items on the MDS-UPDRS, such as items that required observations of foot movement or parts of the body that were not naturally in the frame of the videoconference, clinical raters requested that participants repositioned their webcams or laptops if possible and safe. Participants were then asked to complete the feedback form and mail back all their documents in the return envelope.
This was a feasibility study and hypothesis testing was not conducted. Descriptive statistics were used to report the sample demographics. The postural stability and rigidity testing scores were excluded from the analysis. Graphs were generated in Microsoft 2007 Excel® to demonstrate the frequency of missing data and score differences between face-to-face and videoconference assessment. The number of missing items for each participant was also calculated to explore the median and range for the missing data.
A content analysis was utilised to organise the open response data from participant and clinical rater feedback [
The round trip travel time and distance savings for clinical raters and participants were calculated using Google Maps©. In the first face-to-face appointment, participants or clinical raters travelled between the private clinic and the participant’s home. The starting location entered into Google Maps was the participant’s postcode, obtained in the demographic questionnaire, and the destination was standardised as the University of Queensland Centre for Clinical Research.
Eleven participants were included in this study. The participants were seven men and four women with a median age of 69.0 years (57.0–76.0), living in Queensland, Australia. The median age of diagnosis of PD was 59.0 years (IQR 54.0–71.5), and the median number of years since diagnosis was three years (IQR 2.5–9.5). The MDS-UPDRS indicated that the sample’s symptom severities ranged from slight to severe, with most participants displaying slight-moderate symptoms. Nine out of the 11 participants were taking dopaminergic medication for their PD. Two participants were recipients of deep brain stimulation treatment. Seven out of 11 participants received informal care from family or friends, and two out of 11 received care from a community or residential service.
During the videoconferencing assessment, ten participants used Skype, and one participant used Google+ Hangouts. Two participants used a Smartphone or Tablet device and the remaining nine used a computer.
There was no missing data for the self-report MDS-UPDRS subscales of motor and nonmotor symptoms and motor complications. In the motor examination of each participant, between zero and seven items could not be completed, excluding the intentionally omitted items of rigidity and postural stability. The median number of items missing for each participant was 2.0 (IQR 1.0–4.0). The frequency of the missing items that could not be completed is demonstrated in Figure
Frequency of missing MDS-UPDRS motor examination items during the Internet-based videoconference assessment of 11 participants.
From the clinical rater feedback, two key content areas emerged indicating reasons for missing items. The first, most commonly reported content category, was positioning. Clinical raters reported they were unable to rate some items for some participants due to the inability to see the participants’ entire bodies because of space constraints. Clinical rater 1 reported that “the participant’s office was too small for them to move away from the camera and demonstrate gait, or allow me to observe their lower limbs.” In some cases, clinical raters reported being able to brainstorm with participants to achieve a better vantage point for observation, including using laptops in large open areas so that participants could move away from their webcam enabling their whole body to be seen. It should be noted however that some participants had desktop computers in small rooms that raters felt would be unsafe for participants to move independently to another location. The videoconferencing image frame also impacted on the importance of participant positioning. Clinical raters had “limited vision of whole body perspective” during the interview, causing difficulties in rating items that are intended to be observed throughout the interview such as global spontaneity of movement and constancy of rest tremor. Clinical raters made every effort to safely score all possible items, using the space and equipment available at the participant’s home. Clinical raters noted that although some participants indicated willingness to bring lower limbs into the frame (e.g., by placing feet on a chair), there were concerns that this would be unsafe and an invalid indication of general movement patterns. Webcams inbuilt into computers were unable to be easily manipulated so lower limbs could not be assessed for participants with this setup.
The second major content category explaining missing items was technical difficulties. Internet connections made the images pixelated for two assessments, causing difficulties scoring motor examination items where the criteria for scoring depends on the rhythm and fluency of the participants movement, including finger tapping, hand movements, pronation-supination of hands, leg agility, and toe tapping. Clinical rater 2 reported that they needed “to ask (the participant) to slow down as vision of action was blurry” during the finger tapping task. Postural tremor of the hands, kinetic tremor, and rest tremor amplitude items require an indicator of the magnitude of tremor in centimetres. Clinical rater 3 reported that clinical raters would “need calibration to allow rating of kinetic tremor…for example a ruler as a target” for accuracy.
The difference in scores between the face-to-face and the videoconference assessment for the four subscales of the MDS-UPDRS are represented in Figure
Difference between face-to-face and Internet-based videoconference assessment scores per participant for each MDS-UPDRS subscale.
Participant feedback indicated that the majority of participants, 10 out of 11, rated their experience with using videoconferencing to monitor their PD symptoms as good, and one out of 11 participants rated it as excellent. No participants indicated a neutral or negative experience. The majority of participants, eight, identified with being “quite familiar” or “very familiar” using their respective videoconferencing software, and one participant identified with being “neither familiar nor unfamiliar” and two identified with being “very unfamiliar.”
Participants identified both concerns and advantages. Within concerns, two key content categories emerged: current limits to technology and concern for others’ experiences. Within the first content category, participants identified awareness of clinical raters’ inability to monitor all aspects of their motor performance without changing computer positioning within the home environment. As participant 9 stated, “It’s difficult to see everything that is happening due to space.” Another issue regarding technology was raised by one participant, questioning whether interactions monitored over videoconferencing would stay “secure and private” (participant 10). In the second content category, despite reporting positive experiences for themselves, participants expressed concerns that others may not have such easy access. In particular, there were concerns for patients unfamiliar with, or without access to, computers.
The most frequently reported feedback was the convenience and resource efficiency that videoconferencing permitted. Participant 9 reported, it “saves the travel to see the doctor,” whilst participant 1 stated that reduced travel makes monitoring “less stressful.” Participant 11 also reported that it would be an advantage to see a neurologist more efficiently if “displaying symptoms that were intermittent” which may not be present during their clinic visit. The perceived advantages of using videoconferencing to monitor symptoms were more commonly reported than disadvantages. The overall perception of participants was that this was a good way of monitoring symptoms. Participants identified feeling positive about interacting with the clinical rater via teleconference, as reported by participant 10 “it felt comfortable communicating in this manner.”
In the first face-to-face appointment, participants or clinical raters travelled between the clinic and the participants home, depending on whether the clinical rater was coming to assess the participant in their own home or if the participant was coming to the clinic. The median travel time and travel distance savings when remotely assessing were 86.0 minutes (IQR 38.0–226.0) and 60.2 kilometers (IQR 24.3–278.0) per participant, respectively.
Parkinson’s disease is a condition with high symptom variability that requires frequent monitoring. It was known from previous research that a modified version of the UPDRS excluding rigidity and postural stability testing was reliable and valid, laying the foundations for its use in remote assessment of research participants and clients [
This feasibility study was conducted in the present context of extensive neurologist waiting lists and lack of geographical dispersion of neurologists [
The results reveal how the scores differ between the face-to-face and videoconference assessment, and they suggest that symptoms additional to rigidity and postural stability are difficult to monitor in this medium. The self-report questions in the UPDRS ask participants to consider their symptoms over the past week, whilst the motor examination is based on how their symptoms are at that point in time. This means the scores are expected to vary over time given the often-turbulent nature of PD. Additionally, the motor examination is the only part of the MDS-UPDRS that relies on examiner observation, not self-report; thus it is expected that scores for this subscale will vary the most. Overall, the difference between face-to-face and videoconference scores for the motor examination appear to be the same magnitude as the score differences in the other three MDS-UPDRS sections, which may reflect the variability in PD symptoms, as opposed to variability caused by the videoconference medium.
Three participants demonstrated motor examination score differences inconsistent with the score differences in the other three self-report subscales. Participants 8 and 9 self-report motor complication scores were the same between assessments and their self-report nonmotor was reported to be worse during the videoconference assessment. Participant 11’s self-report scores are in the same direction as their motor examination, however not the same magnitude. The reason behind this difference is not clear as the time since medication was taken, medication type taken, and clinical rater stayed constant between both assessments. However, the impact of particular symptoms and the array of symptoms differed substantially between people with PD, and there are many factors that impact on PD symptoms outside of time since medication, such as comorbidities, general health, and psychosocial factors [
Previous studies investigating the feasibility of online assessment have identified that PD symptoms such as hypophonia (soft voice) may cause clinical raters difficulty in hearing the participant clearly, and symptoms of tremor, rigidity, dyskinesia, and bradykinesia may cause the participants difficulty using computers when needing steady hand movements to navigate a mouse [
A protocol and guidelines should be developed for future studies to reduce the amount of missing items. No specific direction was given about computer setup in this study, but standardised setups from other telehealth processes and established telehealth guidelines could be applied to this situation. For example, the American Telemedicine Association’s Home Telehealth Clinical Guidelines promote providing service users with clear, simplified written information, diagrams and pictures to facilitate the appropriate placement and use of technology [
A limitation of this study was that a clinical rater scored both the face-to-face and videoconference assessments of a participant, which could have resulted in the clinical rater carrying knowledge from the face-to-face assessment into the videoconference assessment. Although this is not desirable in a research setting, clinically this could be an advantage because if a clinical rater is familiar with their client’s symptoms, which would often be the case within clinical teams, they may be able to observe changes in symptoms more easily. Participant self-selection was another limitation, as participants who felt more comfortable using technology may have been more likely to volunteer their participation for this study. Sample size was also reflective of the purpose of this study being a feasibility study. However, some clear issues consistently surfaced after 11 participants, such as there being more missing items than the literature suggested and the videoconferencing process needing more structuring. It was therefore determined that the results from the initial 11 participants and four examiners be analysed and recommendations be made for larger future studies. A limitation that may have contributed to higher missing items then expected was that clinical raters did not receive training to optimise their physical examination skills in a telehealth setting. It should also be acknowledged that clinical raters were not movement disorder specialists, which could have contributed to discrepancies of some of the data.
As the average age of onset of PD is the early-to-mid 60s [
Future studies should consider how many people have access to this technology and show interest in this method of monitoring, and how many health professionals would be open to using this option. In the United States of America, the Connect. Parkinson study found that latent demand for virtual house calls is high, and it would be important to establish whether the demand is similarly as high in Australia [
The results of this study show that despite there being more missing items than expected, this process of monitoring PD symptoms using Internet-based videoconferencing may be useful to give an overall idea of symptom severity over time. It may also be useful in monitoring participant symptoms and reducing travel time, distance, and associated costs to see a health professional. Future research and application should develop and use a protocol which would enable fewer missing items, such as structured environmental setup. Monitoring through videoconference should be pursued further due to consumer interest and because it may provide a more immediate and better overview of a client’s symptoms in between clinic visits.
The authors declare that there is no conflict of interests regarding the publication of this paper.