Background Motor neurone disease (MND) is a fatal neurodegenerative disease characterised by a loss of upper and/or lower motor neurones, consequential progressive respiratory muscle weakness, and eventual death from respiratory failure. Non-invasive ventilation (NIV) is the standard treatment for hypoventilation in these patients; however, literature suggests that patients with MND are often not involved in, and do not fully understand the process of decision-making regarding NIV treatment.
Aim To explore the process of NIV decision-making by patients with MND through a systematic review of the quantitative and qualitative evidence available.
Methods Quantitative and qualitative studies were identified through a search of six databases, and bibliography screening and citation searching of identified and other relevant background articles. Papers were shortlisted based upon pre-established eligibility criteria, data was extracted, and its quality assessed against standardised criteria. The findings were synthesised through thematic analysis of the qualitative data, and the integration of relevant quantitative findings.
Results Four qualitative and three quantitative studies were included. Participants included patients with MND, their caregivers and healthcare professionals (HCPs). The quality of the papers was low to moderate; however, none were excluded on this basis. Three superordinate themes were identified in the literature: the process of decision-making, factors influencing acceptance of NIV, and factors influencing rejection of NIV. One paper found that an education session significantly improved patients’ knowledge (t = 5.9, p≤.001), and helped > 90% of them to make a decision regarding ventilation.
Conclusion Numerous factors – particularly those within the control of HCPs – influence the decision-making process and the decisions patients with MND make; and education helps them make an informed NIV decision which aligns with their values and wishes. However, high-quality evidence is lacking and no established decision-aids for this population currently exist, therefore, further research is needed to develop an appropriate patient-centred aid.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.