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 6 experience of using telehealth. This study was designed to examine the experiences of using 7 telemonitoring in patients with MND on non-invasive ventilation (NIV). 8 Methods: Semi-structured interviews were conducted with seven patients (five males; mean 9 age=63yrs; median illness duration=14m), who used a telemonitoring device for 24 weeks. 10 Caregivers were present at five of the interviews; they supported communications and provided 11 their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was 12 conducted to find overarching themes. 13 Results: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, 14 Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions 15 were observed as a result of regular monitoring, contributing to both physical and psychological 16 well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could 17 reduce costs, save time and ameliorate hassles associated with attending hospital appointments. 18 Participants articulated that telemonitoring enabled symptom awareness and interpretation; the 19 device also enabled the participants to raise concerns and/or requests to the healthcare 20 professionals via the messaging system. Participants confirmed that the telemonitoring device was 21 easy to use, despite some technical issues.

Objective: Previous studies suggest a positive impact of telehealth in the care of people with motor neurone 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 non-invasive 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=14m), who were using NIV. The participants completed overnight oximetry and self-report questions via Careportal® each week, generating interventions where required. Patient-ventilator interaction 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 optimise care. ALSFRS-R showed significant illness deteriorations. Blood oxygen saturation (SpO2) levels were maintained, time ventilated and inspiratory pressures increased during the trial. Conclusion: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 optimise care.

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