Optimising non-invasive ventilation in MND
Research type
Research Study
Full title
Optimising the management of ventilated patients and quality of life in Motor Neurone Disease: a pilot study
IRAS ID
163291
Contact name
Hikari Ando
Contact email
Sponsor organisation
Aintree University Hospital NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
This project is to develop a question set to accompany the remote monitoring of patients with motor neurone disease (MND) who have been prescribed with non-invasive ventilation (NIV). The Careportal® is a CE marked portable tablet computer device allowing telecommunuication between patients and their care team. The Careportal® acts as a modem and processing unit, which in this case will be used to transmit continuous oximetry results and the electronic mapping of the patient ventilator interaction data. Given the features of the Careportal®, there is also an opportunity to develop a bespoke question set for this patient group that would allow the clinical state of individuals to be reported. The aim is to determine whether the questions enable patients to communicate changes in their symptomatic presentation effectively, and whether the responses to the questions correlate with objective measures assessing the adequacy of ventilation and the maintenance of well-being. Participants will be prompted to answer 15-21 questions, which are programmed onto the device, on a weekly basis for up to 6 months. Other data we will collect are: nocturnal oximetry results; three validated scales on illness impact; ventilation-patient interaction data; respiratory functioning tests. The team will optimise the ventilation if the measurements suggest this is required. Ventilation-patient interaction data will be assessed to examine its association with patient’s well-being using validated scales on illness impact. Also, any worsening of symptoms or clinical that would prompt the need for ventilation adjustments or face to face clinical assessment will be monitored. The study focuses on respiratory issues though a couple of generic questions are included. Feedback on tele-monitoring will be also collected at the end of the study through semi-structured interviews, which will later be thematically analysed.
REC name
Wales REC 7
REC reference
14/WA/1199
Date of REC Opinion
23 Oct 2014
REC opinion
Favourable Opinion