Optimising care through Telemonitoring in Ventilated Patients with Motor Neurone Disease: a pilot study

Ando, Hikari and Ashcroft, Helen and Cousins, Rosanna and Young, Carolyn A. and Halhead, Rob and Chakrabarti, Biswajit and Angus, Robert M. (2016) Optimising care through Telemonitoring in Ventilated Patients with Motor Neurone Disease: a pilot study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17 (sup1). p. 55. ISSN 2167-8421

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We are interested in how to optimise care for people with motor neurone disease (MND) who are on non-invasive ventilation (NIV) and whether technology can contribute. We have previously developed a respiratory question set for telemonitoring to complement the monitoring of continuous overnight oximetry and patient ventilator interactions (PVI).
We wished to examine whether proactive management was feasible, determine the work generated for the clinical team and the impact on the maintenance of ventilation.
Ten ventilated patients (male=6; mean age=61yrs; median illness duration=14 months; median NIV usage=11 months) were recruited and followed for 6 months. Participants used a telemonitoring device (Careportal®) to complete the respiratory questions; nocturnal pulse oximetry and PVI were also assessed weekly. Although monitored, patients were told to contact their general practitioner (GP) for emergencies. Revised ALS functional rating scale (ALSFRS-R) and Hospital Anxiety and Depression Scale (HADS) were completed three-monthly. Non-parametric tests were used to identify changes in oxygen saturation levels (SpO2), PVI, ALSFRS-R, and HADS over the trial period.
In total, 118 telemonitoring question alerts led to 40 interventions in 8 patients (equipment provision=16, treatment adjustment=15, direct reviews=8, referral=1), these were needed despite 5 having had recent routine outpatient review. Twenty-four interventions were triggered by the answers to the respiratory questions, 8 were requested by patients through Careportal®, 5 had pressure adjustments to correct suboptimal nocturnal oximetry and 3 were follow-up interventions. Three patients made unscheduled GP contacts and one of them was hospitalised with pneumonia, despite being on antibiotics. Amongst PVI data, minute ventilation (MV) was maintained; baseline mean=6.32 l/min (SD=1.81) and endpoint mean=7.2 l/min (SD=2.64). Inspiratory positive airway pressure (IPAP) [7 patients had alterations] and NIV usage time changed significantly; baseline IPAP cmH2O mean=16.97 (SD=4.2) and end point mean=20.53 (SD=5.46;p=.004); baseline NIV usage mean=8.55hrs (SD=3.32) and endpoint mean=11.45hrs (SD=3.55;p=.006). ALSFRS-R scores deteriorated: baseline mean =22.9 (SD=10.9) and end point mean =18.8 (SD=10.19;p=.008). HADS scores for anxiety did not change from baseline (mean=4.5; SD=3.37) to end point (mean=3.9; SD=3.07) or for depression from baseline (mean=6.3; SD=3.47) to endpoint (mean=8.3; SD=4.85).
Discussion and conclusions
We found weekly telemonitoring to be feasible. Optimisation of SpO2 levels was enabled and ventilation was maintained. The bespoke questions triggered 60% of the interventions, highlighting the importance of symptom review in addition to physiological or PVI measurements. Maintained HADS suggest no adverse effect of telemonitoring, this and whether it is perceived as useful is being explored through qualitative work. This approach may replace some traditional reviews, linking the patient effectively to the care team. Further study should be conducted to examine its impact on the holistic management of this patient group including health economics and outcomes.

Item Type: Article
Additional Information and Comments: This is an Accepted Manuscript of an article published by Taylor & Francis in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, November 2016, (Abstracts from the 27th International Symposium on ALS/MND): available online: http://www.tandfonline.com/doi/abs/10.1080/21678421.2016.1231971
Keywords: Non-invasive ventilation, e-medicine, motor neurone disease
Faculty / Department: Faculty of Science > Psychology
Depositing User: Rosanna Cousins
Date Deposited: 13 Feb 2018 13:42
Last Modified: 16 Mar 2018 11:22
URI: https://hira.hope.ac.uk/id/eprint/2365

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