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

Abstract

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.

Keywords:

• Questionnaire
• telemonitoring
• telehealth
• NIV
• respiratory symptoms

Acknowledgments

This work was collaboration between AUHFT and Docobo Ltd., who make the Careportal^®. The AUHFT team, in collaboration with our colleagues the Walton Center NHS Foundation Trust developed the question set, as well as delivering the respiratory management of patients using the telemonitoring intervention. When the question set had been iterated the display and layout of the questions was informed by Docobo’s experience, e.g. whether questions should be nested or single. Docobo is pleased to have the question set published for general use. We would like to give special thanks to our participants who graciously gave their time to take part in this study.

Declaration of interest

Rob Hallhead and Peter Leven make the Careportal^® and the software used in Smart Devices.

Additional information

Funding

The work was supported by a grant from UK’s the Small Bisiness Research Initiative (SBRI).