Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS) is a progressive, debilitating neurodegenerative disorder characterised by a loss of motor neurons (1). Death typically occurs within 3 years and the most common cause of death is respiratory failure (2). Non-invasive ventilation (NIV) has been shown to improve both survival and quality of life in patients with MND/ALS (3). However, it is important that the ventilation is optimal to ensure that patients get the most benefit.
There is little evidence for how best to deliver NIV to patients with MND/ALS to ensure that adherence and effective ventilation are achieved. This includes how and when to refer, as well as how and when to initiate and monitor patients on NIV. As a result, the practices and approaches to referring, initiating and monitoring NIV vary between different services. Previous research has indicated that these service factors can have an impact on the success of NIV (4, 5). Therefore, patients may not be getting the full benefit from the intervention.
There is a need to further map and explore current clinical practice, to understand the barriers and enablers to NIV use and for clear evidence-based recommendations on how best to deliver NIV.
Healthcare professionals working in the respiratory/ventilation service and the community team will be targeted. We will invite healthcare professionals to complete an online survey, which will explore their individual practices and experiences of recommending, supporting and delivering NIV to people with MND/ALS.
The results will allow us to see how practice varies and to identify areas of best practice. This study will use these findings to develop resources to help improve the way in which NIV is delivered.
The survey is open until Tuesday 26th March 2019.
If you are a healthcare professional working in the United Kingdom and are interested in completing the survey, please click on the link below:
Please use the links on the right to learn more about the study and to access the participant information sheet.
National Institute for Health Research Programme Grant for Research for Patient Benefit (RfPB).
Sheffield Teaching Hospitals NHS Foundation Trust