Telemedicine Chapter 12: Telemedicine and Motor Neurone Disease

This chapter is part of Literature reviews carried out for the Heath Service Executive National Telehealth Steering Group April – July 2020

Systematic Reviews

Helleman, J et al (2019) [Systematic Review]The Current Use of Telehealth in ALS Care and the Barriers to and Facilitators of Implementation: A Systematic Review1

Objective: We aimed to provide an overview of telehealth used in the care for patients with amyotrophic lateral sclerosis (ALS), and identify the barriers to and facilitators of its implementation.

Methods: We searched Pubmed and Embase to identify relevant articles. Full-text articles with original research reporting on the use of telehealth in ALS care, were included. Data were synthesized using the Consolidation Framework for Implementation Research. Two authors independently screened articles based on the inclusion criteria.

Results: Sixteen articles were included that investigated three types of telehealth: Videoconferencing, home-based self-monitoring and remote NIV monitoring. Telehealth was mainly used by patients with respiratory impairment and focused on monitoring respiratory function. Facilitators for telehealth implementation were a positive attitude of patients (and caregivers)toward telehealth and the provision of training and ongoing support. Healthcare professionals were more likely to have a negative attitude toward telehealth, due to the lack of personal evaluation/contact and technical issues; this was a known barrier. Other important barriers to telehealth were lack of reimbursement and cost-effectiveness analyses. Barriers and facilitators identified in this review correspond to known determinants found in other healthcare settings.

Conclusions: Our findings show that telehealth in ALS care is well received by patients and their caregivers. Healthcare professionals, however, show mixed experiences and perceive barriers to telehealth use. Challenges related to finance and legislation may hinder telehealth implementation in ALS care. Future research should report the barriers and facilitators of implementation and determine the cost-effectiveness of telehealth.

Hobson, EV et al (2016) [Systematic Review] Using Technology to Improve Access to Specialist Care in Amyotrophic Lateral Sclerosis: A Systematic Review2

Our objective was to review the evidence for using technology to improve access to specialist care for patients with amyotrophic lateral sclerosis (ALS) and their carers. Medline, Google Scholar and the Cochrane library were searched for articles describing technology that enabled clinical care of patients with ALS or their carers where the patient/carer and clinician were not in the same location. Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure. One randomized controlled trial using telehealth in patients with respiratory failure including 22 patients with ALS was identified. While rates of hospitalization were reduced, overall mortality was unchanged and there were too few patients with ALS in the study to detect significant benefit. In conclusion, there is limited evidence to support the use of telemedicine or telehealth in the care of patients with ALS. Future research needs to develop an understanding of the key beneficial aspects of the traditional specialist ALS service and how these factors could be delivered using technology. Successful evaluation and implementation of technologies to facilitate access to specialist care will only be possible if all the relevant impacts of an intervention are understood and measured.


Haulman, A et al (2020) [Review] The Use of Telehealth to Enhance Care in ALS and Other Neuromuscular Disorders3

Telehealth has the potential to improve the efficiency of healthcare while reducing the burden on patients and caregivers. Encounters can be synchronous or asynchronous. When used for care of those with amyotrophic lateral sclerosis (ALS) by individual health care providers or by a multidisciplinary team, synchronous telehealth is feasible, acceptable, may produce outcomes comparable to those of in-person care, and is cost effective. Individuals with ALS who use telehealth tend to have lower physical and respiratory function and to live farther from an ALS clinic than those who exclusively attend in-person clinic visits. Asynchronous telehealth can be used as a substitute full multidisciplinary visits, or for remote monitoring of pulmonary function, gait/falls, and speech. Barriers to implementing telehealth on a wider scale include disparities in access to technology and challenges surrounding medical licensure and billing, but these are being addressed.

Helleman, J et al (2020) Telehealth as Part of Specialized ALS Care: Feasibility and User Experiences With “ALS Home-Monitoring and Coaching”4

Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals.

Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptomworsening, and nurse practitioner follow-up. Patients self-monitored their well-being, body weight and functional status. The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients.

Results: The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care.

Conclusions: ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.

Ando, Het al (2019 )Experience of Telehealth in People With Motor Neurone Disease Using Noninvasive Ventilation5

Introduction: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV).

Methods: Semistructured interviews were conducted with seven patients [five males; mean age = 63 yrs; median illness duration = 14 m], who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes.

Results: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patientcaregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues.

Conclusions: Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients’ well-being, while potentially reducing unnecessary clinical contact. Implications for Rehabilitation Care for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration. Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring. Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients. Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.

Ando, H et al (2019) Incorporating Self-Reported Questions for Telemonitoring to Optimize Care of Patients With MND on Noninvasive Ventilation (MND OptNIVent) 6

Objective: Previous studies suggest a positive impact of telehealth in the care of people with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). This study reports the development of self-reported questions for telemonitoring, using a tablet-based device Careportal® , in the care of patients with MND on noninvasive ventilation (NIV) and its initial impact.

Methods: The study consisted of a question development phase and an evaluation phase of the use of Careportal® . The development phase employed a modified Delphi process. The evaluation phase involved a 24- week pilot study with 13 patients [median age = 66; median illness duration =14 m], who were using NIV. The participants completed overnight oximetry and self-report questions via Careportal® each week, generating interventions where required. Patient-ventilator interaction (PVI) data were monitored and the revised ALS functional rating scale (ALSFRS-R) was completed.

Results: Telemonitoring encompassing the newly developed 26- item symptom questions showed good feasibility and validity. During the evaluation phase, 61 interventions were made for 10 patients, including seven patients who had routine clinic appointments during the trial to optimize care. ALSFRS-R showed significant illness deteriorations. Blood oxygen saturation (SpO2)levels were maintained, time ventilated and inspiratory pressures increased during the trial. Conclusions: The MND OptNIVent question set together with weekly ventilator and oximetry monitoring facilitated the maintenance of ventilation and SpO2 levels despite illness progression. The use of the question set, and devices, such as Careportal® , facilitate care and may further enable a single point of contact for patients from which clinicians may offer proactive interventions to optimize care.

Geronimo, A, Simmons, Z (2019) Evaluation of Remote Pulmonary Function Testing in Motor Neuron Disease7

Introduction: Motor neuron disease (MND) causes respiratory insufficiency, which is managed in part through use of noninvasive ventilation (NIV). Guidelines for the initiation of NIV are based on pulmonary function tests (PFTs), usually performed once every three months. In the setting of MND telemedicine, remote monitoring of respiratory health may permit earlier intervention, but proof of equivalence to conventional PFTs is lacking.

Methods: We implemented delivery of remote PFTs (rPFTs), based on our institution’s telemedicine platform, with the goals of validating measurement equivalence to conventional forced vital capacity (FVC) and maximal inspiratory pressure (MIP) assessments, and assessing process acceptability from both patients and therapists.

Results: When remotely guided by a respiratory therapist, 40 patient/caregiver teams produced respiratory parameters that were tightly correlated with those acquired through the standard evaluation. Both patients and therapists generally rated the setup and use of the devices positively, with patient ratings higher than those of the therapists.

Discussion: This study suggests that rPFTs are accurate and acceptable, and thus may be incorporated into MND telemedicine for clinical and research use.

Hobson, EV et al (2019) The TiM System: Developing a Novel Telehealth
Service to Improve Access to Specialist Care in Motor Neurone Disease Using User-Centered Design8

Objectives:Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care.

Methods:We adopted an iterative, user-centered co-design approach, collaborating with those with experience of providing and receiving MND care including patients, carers, clinicians, and technology developers. We explored the unmet needs of those living with MND, how they might be metthrough service redesign and through the use of digital technologies. We developed a new digital solution and performed initial testing with potential users including clinicians, patients, and carers.

Results:We used these findings to develop a telehealth system (TiM) using an Android app into which patients and carers answer a series of questions about their condition on a weekly basis. The questions aim to capture all the physical, emotional, and social difficulties associated with MND. This information is immediately uploaded to the Internetfor review by the MND team. The data undergoes analysis in order to alert clinicians to any changes in a patient or carer’s condition.

Conclusions:We describe the benefits of developing a novel digitally enabled service underpinned by participatory design. Future trials must evaluate the feasibility and acceptability of the TiM system within a clinical environment.

Hobson, EV et al (2019) [Mixed-Methods Pilot and Feasibilty Study] Using Telehealth in Motor Neuron Disease to Increase Access to Specialist Multidisciplinary Care: A UK-based Pilot and Feasibility Study9

Objectives: Care of patients with motor neuron disease (MND)in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM)in patients with MND. Design:An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study. Intervention: TiM telehealth plus usual care versus usual care. Setting:A specialist MND care centre in the UK. Participants: Patients with MND and their primary informal carers.

Primary and Secondary Outcome Measures: Recruitment, retention and data collection rates, clinical outcomes including participant quality of life and anxiety and depression.

Results: Recruitment achieved the target of 40 patients and 37 carers. Participant characteristics reflected those attending the specialist clinic and included those with severe disability and those with limited experience of technology. Retention and data collection was good. Eighty per cent of patients and 82% of carer participants reported outcome measures were completed at 6 months. Using a longitudinal analysis with repeated measures of quality of life (QoL), a sample size of 131 per arm is recommended in a definitive trial. The methods and intervention were acceptable to participants who were highly motivated to participate to research. The low burden of participation and accessibility of the intervention meant barriers to participation were minimal. However, the study highlighted difficulties assessing the associated costs of the intervention, the challenge of recruitment in such a rare disease and the difficulties of producing rigorous evidence of impact in such a complex intervention.

Conclusion:A definitive trial of TiM is feasible but challenging. The complexity of the intervention and heterogeneity of the patient population means that a randomised controlled trial may not be the best way to evaluate the further development and implementation of the TiM.

Murray, D et al (2019) [Conference Abstract] A survey of healthcare
professionals on the measurement of physical functioning in
amyotrophic lateral sclerosis (ALS)/motor neurone disease (MND)and attitudes to development of technology based measurement and monitoring solutions10

Background: Specialised multidisciplinary clinics are recommended for people with ALS/MND, however, disadvantages including burden of travel have been identified. Innovative service models utilising telemedicine have been reported 1., but with limitations in patient assessment. Novel assessment methods are required to maximize tele-medicine service delivery and priorities for clinically meaningful assessment need identification. Furthermore,the attitudes of healthcare professionals to developments in telemedicine for ALS/MND care requires investigation.

Objectives: The aim of the project was to survey healthcare professionals regarding: 1. the use of and attitudes towards current outcome measurement tools; 2. their attitudes towards technology based measurement tools, remote monitoring and telemedicine.

Methods: An online survey for healthcare professionals was designed. Demographics and service descriptors were sought. Information was collected regarding physical functioning assessment methods used and the attitudes of the respondents to these tools. The perspectives of respondents regarding the potential for development of technology based assessment methods was sought. Finally, a questionnaire designed to evaluate the acceptance of healthcare professionals to incorporation of telemedicine was completed. The survey was disseminated via email invitation, Twitter and Facebook between May and August 2019.

Results: Forty-five respondents from six countries included neurologists, nurses and therapists working in hospital and community based settings, 50% of whom described themselves as expert clinicians. Only 9.7% reported that ALS/MND specific telemedicine infrastructure was used, while 51.6% indicated that this was not available but they would prefer to use it. Video conferencing was used by 45%, 16% reported using remote monitoring while 38.7% indicated that they would prefer it use it if available. The most commonly used assessment method were subjective symptoms (89.7%), weight (79.3%) and the ALSFRS-R (67.9%). 65.5% agreed that current measurement tools are clinically meaningful, while only 38% agreed that they are used consistently across sites. Health professionals identified a wide variety of constructs as the most important variables to measure in their patients.

Discussion and Conclusion: A minority of clinicians report using telemedicine in ALS/MND clinical care, while a significant percentage indicate that they would prefer to use it if available. There is concern about a lack of consistency in outcome measure use across sites. New measurement tools providing consistent and valid data regarding physical status and progression are required in ALS/MND.

Sivaramakrishnan, A et al (2019) Remotely Supervised Transcranial Direct Current Stimulation: A Feasibility Study for Amyotrophic Lateral Sclerosis11

Background: Transcranial direct current stimulation (tDCS) has been investigated as a therapeutic neuromodulation tool in several neurological disorders. However, evidence supporting its efficacy in disorders such as amyotrophic lateral sclerosis (ALS)is limited possibly due to limited patient accessibility for research, particularly for individuals with advanced disease progression. Telerehabilitation using home-based protocols allows for remote supervision of tDCS over longer durations, thereby increasing participation, compliance and adherence. In this study, we explored the safety, feasibility and preliminary effects of a remotely supervised tDCS (RStDCS) protocol in ALS.

Material and Methods: In this pre-post case series study, two individuals with ALS completed 24 remotely supervised anodal tDCS sessions (20 minutes, 2 mA). Outcomes included adherence, compliance, disease progression, walking speed, risk of fall, endurance, fatigue and depression.

Results:Both participants successfully completed the study without any major adverse effects. Minor side effects included mild sensations of itching and throbbing under the electrodes during stimulation. Clinical outcomes showed minimal to no change for any of the measures.

Conclusions: Preliminary findings suggest that the RS-tDCS protocol is safe and feasible in individuals with ALS. Our protocol serves as a model for future long-term studies to evaluate the clinical and neurophysiological effects of tDCS using a telerehabilitation protocol in ALS.

Geronimo, A et al (2017) [Feasibility Study] Incorporation of Telehealth Into a Multidisciplinary ALS Clinic: Feasibility and Acceptability12

Objective: The practice of telehealth in the care of patients with ALS has received little attention, but has the potential to change the multidisciplinary care model. This study was carried out to assess the feasibility and acceptability of telehealth for ALS care via real-time videoconferencing from the clinic to patients’ homes.

Methods: Patients and caregivers engaged in live telehealth videoconferencing from their homes with members of a multidisciplinary ALS care team who were located in an ALS clinic, in place of their usual inperson visit to the clinic. Participating patients, their caregivers, and health care providers (HCPs) completed surveys assessing satisfaction with the visit, quality of care, and confidence with the interface. Mixed methods analysis was used for survey responses.

Results: Surveys from 11 patients, 12 caregivers, and 15 HCPs were completed. All patients and caregivers, and most HCPs, agreed that the system allowed for good communication, description of concerns, and provision of care recommendations. The most common sentiment conveyed by each group was that telehealth removed the burdens of travel, resulting in lower stress and more comfortable interactions. Caregivers and HCPs expressed more concerns than patients about the ways in which telehealth fell short of in-person care.

Conclusions: Telehealth was generally viewed favourably by ALS patients, caregivers, and multidisciplinary team members. Improvements in technology and in methods to provide satisfactory remote care without person-to-person contact should be explored.

Selkirk, S et al (2017) Delivering Tertiary Centre Specialty Care to ALS Patients via Telemedicine: A Retrospective Cohort Analysis13

Objective: This study was undertaken to determine if ALS patients evaluated via telemedicine received the same quality of care as patients evaluated by traditional face-to-face encounters.

Methods: A retrospective cohort study design was used. Participants were patients diagnosed with ALS that received multidisciplinary care at the tertiary Cleveland VA ALS Centre between 1 March 2008- and 31 anuary 2015. Participants were not randomised, but chose telemedicine based on preference, disability level or distance from the clinic. Telemedicine in this study consisted of a video conferencing platform enabling remote rather than face-to-face encounters with participants.

Results: There was no significant association between receiving quality ALS care and the mode of care. There was a trend for telemedicine patients to utilise home health care less often than those that received clinic care (AOR 0.50; 95% CI 0.16-1.59). There was no significant difference in survival time between the two groups (log-rank test χ 2 = 3.62, df = 1, p = 0.05). Patients receiving telemedicine had a higher probability of remaining stable or having <30% decrease in ALSFRS-R over time (log-rank test χ 2 = 4.46, df = 1, p = 0.03). There was a significantly lower risk of disease progression for patients receiving telemedicine (HR = 0.39, 95% CI = 0.16-0.93).

Conclusions: Patients managed by telemedicine received the same quality of care and had similar outcomes to those patients seen via traditional face-toface encounters. Telemedicine is an effective platform for delivering high quality tertiary ALS care.

Ashcroft, H et al (2016) [Conference Abstract] S57 Qualitative assessment of the experience of telemonitoring in ventilated patients with motor neurone disease14

Background: The National Institute for Health and care Excellence (NICE) has recently issued recommendations on the care of people with motor neurone disease (MND), promoting tailored care for each patient. Previous studies suggest remote monitoring offers a facility to regularly monitor and interact with patients, providing timely interventions so it may facilitate delivery of the recommendations. The efficacy of this approach is dependent upon acceptability of telemonitoring to patients.

Aim: To understand the experiences of using telemonitoring in ventilated patients with MND. Methods: Semi-structured interviews were conducted with seven patients (male = 5; mean age = 63 yrs). The median illness duration was 14 m (range = 7 m–13 yrs 7 m) and the median non-invasive ventilation (NIV) usage was 12 m (range = 0 m–3 yrs). Participants used a telemonitoring device (Docobo CAREPORTAL®)for six months, completed weekly nocturnal pulse oximetry and symptom-related questions. Five caregivers were present at the interviews and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. The interpretation was reviewed and supported by a multidisciplinary team examination.

Findings: Five themes were identified: Technical Challenges, Increased Self Awareness, Taking Initiative, Benefits of Timely Intervention, and Reducing the Unnecessary. Whilst participants expressed general ease of Careportal® use, technical issues included; messaging system challenges, oximetry transmission, device fault, mobile signal loss. No other negative experience of using Careportal® was reported. Overall, participants expressed how telemonitoring enabled symptom awareness and interpretation. The device also enabled the participants to raise their concerns and/or requests to the healthcare professionals via the messaging system, and this was depicted as a sharp contrast to current communication with hospitals. Timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. It was also suggested that using Careportal® could reduce unnecessary cost/time and hassles created by attending hospital appointments.

Conclusions: Telemonitoring enabled participants to be actively involved in their care and they felt that the interventions were timely delivered to meet their needs. The findings suggest potential benefits of utilising Careportal ® in routine care as a contact point to accommodate different individual’s needs.

Ashcroft, H et al (2016) [Conference Abstract] Telemonitoring to optimise care in motor neurone disease: A pilot study15

Background:Advances in telemedicine may benefit patients with motor neurone disease/ amyotrophic lateral sclerosis (MND/ALS).

Aims: This study aimed to improve care through telemonitoring utilising standardised symptom monitoring, clinical measurements and assessment non-invasive ventilation (NIV) parameters. It was hypothesised that telemonitoring allows proactive intervention allowing symptom management and optimised ventilation indicated by adequate nocturnal SpO2 levels and minute ventilation (MV).

Methods:13 ventilated patients [mean age=62yrs; median illness duration=14m; median NIV usage= 8m] were recruited. Previously developed questions monitored symptoms and NIV-related issues, generating alerts and interventions where required. Nocturnal pulse oximetry and the patient-ventilator interaction (PVI) data were collected weekly. A revised ALS functional rating scale (ALSFRS-R) was completed three-monthly. Friedman’s ANOVA and Spearman’s correlation coefficient were used for analysis at the baseline, at 3 month, and at 6 month.

Results: In total, 137 alerts led to 62 interventions [direct review 13, treatment adjustment 14, equipment provision 20, referral 15]. Inspiratory positive airway pressure levels were increased median 16.8 and 21.9cmsH20 (Wk1 and 22), NIV adherence also increased over time (both p<.01). No change was observed with nocturnal SpO2 levels. ALSFRS-R scores showed illness deteriorations. No consistent correlations were found between the variables.

Conclusions: This pilot study found telemonitoring to be beneficial in maintaining ventilation MND despite the illness deterioration.

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