Incorporating self-reported questions for telemonitoring to optimise care of patients with MND on non-invasive ventilation (MND OptNIVent)

Ando, Hikari and Ashcroft, Helen and Halhead, Rob and Young, Carolyn and Chakrabarti, Biswajit and Levene, Peter and Cousins, Rosanna and Angus, Robert (2019) Incorporating self-reported questions for telemonitoring to optimise care of patients with MND on non-invasive ventilation (MND OptNIVent). Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. ISSN 2167-8421

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Abstract

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 SpO 2 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.

Item Type:	Article
Additional Information and Comments:	This is an Author's Original Manuscript of an article accepted for publication in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [copyright Taylor & Francis]. The final, published version is available online at https://doi.org/10.1080/21678421.2019.1587630
Faculty / Department:	Faculty of Human and Digital Sciences > School of Psychology
Depositing User:	Matthew Adams
Date Deposited:	10 Mar 2019 14:44
Last Modified:	26 Mar 2020 01:15
URI:	https://hira.hope.ac.uk/id/eprint/2777

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