Over the recent past, telemedicine in movement disorders has played an increasingly important role in improving patient access to specialist care, particularly for individuals living in remote areas or those suffering from significant disability due to chronic neurological illnesses. 1 When the healthcare landscape changed further during the early stages of the pandemic owing to many movement disorders services needing to reduce or cancel non‐urgent care in order to prioritize resources, this inevitably led to a surge in telemedicine use. 2 The Canadian healthcare system is particularly suitable for telemedicine due to the presence of few tertiary centers distributed within a large geographical area spanning three time zones, billing codes, and telemedicine infrastructures that have been in place well before the COVID‐19 pandemic. Accordingly, in 2018, we published the first experience with the use of the Ontario Telemedicine Network in DBS patients in our center. In this study, stimulation adjustments were performed by the patient, caregiver or nurse, by means of a patient controller that was pre‐programmed by the clinician, thus a paucity of stimulation options were available. 3 Such approach comes with challenges as self‐adjustments made by means of the aforementioned patient's controller can lead to a delay in programming optimization as well as increased side effects. 4 Telemedicine in DBS therefore needed change and the pandemic has auspiciously expedited the utilization of innovative technology, namely remote programming.
As of July 26, 2022, healthcare professionals in Canada trained in providing DBS care have been able to program patients’ DBS devices remotely via a secure virtual platform called NeuroSphere™ Virtual Clinic Remote Care (Abbott, Austin, Texas, USA). To date, we have enrolled 18 patients, 10 of whom have successfully undergone remote programming for the first time in Canada, either during the post‐operative phase (n = 5) or subsequent follow‐up evaluations (n = 5). All patients needed at least one in‐person visit, usually the first programming session after surgery, in order to enroll them into the program and to carry out a “monopolar review” of the electrodes. Patients included five women with an average age of 64.6 ± 6.2 years (range: 52–74). All patients but two had Parkinson's disease (PD) while remaining cases included generalized dystonia and tremor (one case each) for a mean disease duration of 17.3 ± 13.1 years (range: 7–42). They underwent an average of 2.8 ± 2.3 (range: 1–7) remote programming sessions, each lasting 60 min in duration and carried out by a DBS neurologist. Similar to in‐person reviews, PD patients were provided weekly appointments (for 4–6 weeks) during the initial programming phase, and monthly for dystonia and tremor cases. Follow‐up appointments were 3–6 months. Four patients attended their remote sessions alone and 6 patients were accompanied by their caregiver. Figure S1 shows the geographical distribution of these patients, who lived on average 2197.2 ± 1488.0 km (range: 122.5–4059) from our center with an average travel time of 250.8 ± 100.4 min (range: 93–423), all but three patients usually require to come by flight. Sessions were arranged routinely (except one) with all patients reporting clinical improvement, and the majority (70%) rating the improvement as at least moderate. One patient required an urgent follow‐up appointment following their in‐person review to have the upper amplitude limit increased remotely (for self‐adjustment). Stimulation changes varied between patients, ranging from no change (n = 1) to new programs created (n = 6) (Table 1). No extra visits were performed on the same day or urgent appointments afterwards. Clinical markers, such as bradykinesia and/or tremor (eg, UPDRS‐III for PD), were used to guide remote programming. No significant adverse effect or technical issue related to the platform was reported.
TABLE 1.
Clinical summary of first 10 DBS patients programmed remotely from Toronto Western Hospital, Ontario
| No. | Sex | Age | Location | Distance (km) | Travel time (min) a | Diagnosis | Disease duration (Y) | DBS target | Most bothersome symptom(s) | Patient reported outcome | Type of visit (total N of remote sessions) | Challenges faced during programming and stimulation changes made | Configuration of DBS settings |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 1 | M | 69 | Mt Pearl, NFL, CA | 3068.6 | 184 (flight) | PD | 17 | Bilateral STN | Tremor, balance, peak dose dyskinesia | Moderately improved | F/U (1) | None. | R STN: C + 2−/6 mA/60 ms/180 Hz |
| Changes made: new program–higher frequency | L STN: C + 11−/2.35 mA/60 ms/130 Hz | ||||||||||||
| 2 | M | 64 | Utopia, ON, CA | 122.5 | 93 | PD | 9 | Bilateral STN | Tremor, peak‐dose dyskinesia, motor fluctuations | Mild‐moderately improved | F/U (1) | Stimulation‐induced dyskinesia. | R STN: C + 11−/3.9 mA/30 ms/130 Hz |
| Changes made: none | L STN: C + 3−/5.3 mA/30 ms/130 Hz | ||||||||||||
| 3 | F | 74 | Vernon, BC, CA | 3953.7 | 299 (flight) | GD | 40 | Left VIM | Dystonic tremor | Moderately‐greatly improved | F/U (1) | Stimulation‐induced dizziness and nausea (transient). | L VIM: C + 10B−/1.20 mA/60 ms/130 Hz |
| Changes made: higher amplitude | |||||||||||||
| 4 | F | 71 | Trinidad and Tobago | 4059 | 298 (flight) | PD | 8 | Bilateral GPi | Rigidity, peak‐dose dyskinesia, motor fluctuations | Mild‐moderately improved | F/U (3) | Freezing of gait, balance issues, increased risk of falling. | R GPi: C+ 2−/1.25 mA/60 ms/60 Hz |
| Changes made: new program–interleaving with lower frequency | R GPi: C+ 3−/2.60 mA/60 ms/60 Hz | ||||||||||||
| L GPi: C+ 10−/1.25 mA/60 ms/60 Hz | |||||||||||||
| L GPi: C+ 11−/2.75 mA/60 ms/60 Hz | |||||||||||||
| 5 | F | 66 | Cocagne, NB, CA | 1476 | 213 (flight) | PD | 7 | Bilateral STN | Tremor, rigidity, peak‐dose dyskinesia, motor fluctuations | Moderately improved | I/P, 4 | Stimulation‐induced dysarthria. | R STN: C+ 2B−/2.7 mA/60 ms/160 Hz |
| F/U, 3 (7) | Changes made: new program–current steering (directional), higher amplitude, shorter PW | L STN: C+ 10A‐10C‐11A‐11C−/4.5 mA/30 ms/160 Hz | |||||||||||
| 6 | F | 64 | Fenelon Falls, ON, CA | 157.6 | 122 | PD | 11 | Bilateral GPi | Stiffness, rigidity, motor fluctuations | Mild‐moderately improved | I/P (1) | Stimulation‐induced dysarthria and freezing of gait. | R GPi: C+ 3−/5.0 mA/30 ms/130 Hz |
| Changes made: new program–current steering (directional) | L GPi: C+ 11B−/4.0 mA/30 ms/130 Hz | ||||||||||||
| 7 | M | 64 | St. John, NFL, CA | 3077.8 | 266 (flight) | PD | 10 | Bilateral GPi | Tremor, rigidity, motor fluctuations, hypophonia | Moderately improved | F/U (1) | None. | R GPI: C+ 2−/3.7 mA/60 ms/130 Hz |
| Changes made: increase in upper amplitude limit (for self‐adjustment) | L GPI: C+ 11−/ 3.7 mA/60 ms/130 Hz | ||||||||||||
| 8 | M | 63 | Sault Ste. Marie, ON, CA | 699 | 423 | PD | 9 | Bilateral STN | Tremor, motor fluctuations | Moderately‐greatly improved | I/P (5) | Freezing of gait, persistent tremor. | R STN: C+ 3−/5.0 mA/60 ms/80 Hz |
| Changes made: new program–lower frequency, shorter PW, higher amplitude | L STN: C+ 11−/5.0 mA/50 ms/80 Hz | ||||||||||||
| 9 | F | 59 | Corner Brook, NFL, CA | 2407 | 266 (flight) | PD | 20 | Bilateral STN | Stiffness, rigidity, tremor, motor fluctuations | Moderately improved | I/P, 5 | Stimulation‐induced dyskinesias and dystonia. | R STN: C+ 2−/3.0 mA/60 ms/130 Hz |
| F/U, 1 (6) | Changes made: new program–shorter PW, higher amplitude (tried: current steering) | L STN: C+ 10−/2.8 mA/30 ms/130 Hz | |||||||||||
| 10 | M | 52 | Saskatoon, SK, CA | 2950.5 | 344 (flight) | Ataxia and tremor | 42 | Left VIM | Tremor | Moderately improved | I/P (2) | Refractory tremor. | L VIM: C+ 3–4−/3.6 mA/60 ms/130 Hz |
| Changes made: higher amplitude |
Abbreviations: BC, British Columbia; CA, Canada; F/U, follow‐up; GD, generalized dystonia; GPi, Globus pallidus pars interna; Hz, Hertz; I/P, initial programming; L, left; ms, microseconds; mA, milliampere; Min, minutes; NB, New Brunswick; NFL, Newfoundland and Labrador; ON, Ontario; PD, Parkinson's disease; PW, pulse width; R, right; SK, Saskatchewan; STN, subthalamic nucleus; VIM, nucleus ventralis intermedius of the thalamus; Y, years.
Average depending on traffic by car unless otherwise specified; in case of flight, time does not include the car ride to and from the airport to Toronto Western Hospital (52.5 min).
Remote programming addresses an important gap in DBS care by removing the geographical barrier. It is a great step forward toward universal access to DBS services by offering patients quick and flexible access to the DBS clinic, especially those who were previously excluded due poor access to specialist care. It also has the potential to redistribute resources by cutting down waiting lists, improving patient flow as well as potentially reducing last‐minute appointment cancellations. It is important to note however that virtual care cannot replace in‐person consultations altogether as there are important aspects of the neurological examination that need to be carried out physically, such as assessing rigidity or performing a pull test to look for postural instability. As remote programming gathers momentum, there will be an even greater need to develop clinical guidelines on the use of telemedicine in DBS to ensure that virtual DBS care becomes an integral part of practice.
Author Roles
(1) Research project: A. Conception, B. Organization, C. Execution; (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique; (3) Manuscript Preparation: A. Writing of the first draft, B. Review and Critique.
W.F.: 1B, 1C, 2B, 3A
M.J.: 1B, 2C, 3B
M.H.: 1B, 3B
R.M.: 1B, 2C, 3B
S.K.: 3B
A.L.: 3B
A.F.: 1A, 1B, 1C, 2A, 2B, 2C, 3B
Disclosures
Ethical Compliance Statement: The authors confirm that the approval of an institutional review board was not required for this work. Informed consent was obtained for videos/photographs. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.
Funding Sources and Conflicts of Interest: This study was partly funded by the University of Toronto and University Health Network Chair in Neuromodulation to AF. AF received honoraria from Abbott for work unrelated to the content of this publication. WF was partly funded by Abbott during the Movement Disorders Surgical Fellowship.
Financial Disclosures for the Previous 12 Months: WF, MJ, MH and RM declare that there are no additional disclosures to report. SK is a consultant to Abbott, Boston Scientific, Medtronic and Novo Nordisk. SK received honoraria from Abbott, Boston Scientific and Medtronic. AL is a consultant to Abbott, Boston Scientific, Insightec, Medtronic. AL is a Scientific Director at Functional Neuromodulation. AF is a consultant to Abbvie, Abbott, Boston Scientific, Inbrain, Ipsen, Medtronic, Sunovion, Syneos Health. AF is on the advisory board for Abbvie, Boston Scientific, Ceregate and Ipsen. AF received Honoraria from Abbvie, Abbott, AAN, Boston Scientific, Brainlab, Ipsen, Medtronic, Merz, Movement Disorders Society, Sunovion, Paladin Labs, UCB.
Supporting information
Figure S1. Map illustrating the locations of the 10 patients undergoing remote programming carried out from Toronto Western Hospital, Ontario.
References
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Figure S1. Map illustrating the locations of the 10 patients undergoing remote programming carried out from Toronto Western Hospital, Ontario.