A survey exploring the services that provide and deliver non-invasive ventilation to people with motor neurone disease.

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.

The main aim of this study is to explore and map the current clinical practices of recommending, supporting and delivering NIV services to people with MND in the United Kingdom.

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:

 Survey

For more information:

Please use the links on the right to learn more about the study and to access the participant information sheet.

Funding

National Institute for Health Research Programme Grant for Research for Patient Benefit (RfPB).

Sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

 
References

1. Pattern SA, Armstrong GAB, Lissouba A, et al. Fishing for causes and cures of motor neuron disorders. Dis Model Mech. 2014;7:799-809
2. Rafiq MK, Proctor AR, McDermott CJ, et al. Respiratory management of motor neurone disease: a review of current practice and new developments. Pract Neurol. 2012;12:166-176.
3. Bourke SC. Tomlinson M, Williams TL, et al. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial. Lancet Neurol. 2006;5(2):140-147
4. Kareus SA, Kagebein S, Rudnicki SA. The importance of a respiratory therapist in the ALS clinic. Amyotroph Lateral Scler. 2008;9:173-176.
5. O'Neill CL, Williams TL, Peel ET, et al. Non-invasive ventilation in motor neuron disease: an update of current UK practice. J Neurol Neurosurg & Psychiatry. 2012;83(4):371-376.