Incorporating self-reported questions for telemonitoring to optimize care of patients with MND on noninvasive ventilation (MND OptNIVent)

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(R), 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(R). 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 questionsviaCareportal(R)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 (SpO(2)) 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 SpO(2)levels despite illness progression. The use of the question set, and devices, such as Careportal(R), facilitate care and may further enable a single point of contact for patients from which clinicians may offer proactive interventions to optimize care.