To what extent does assistive technology (AT) impact quality of life for people living with motor neurone disease (MND) in Australia, from the perspective of bereaved carers?

Background: People with MND experience increasing functional decline as motor neurone degeneration increases. AT are often prescribed by multidisciplinary teams to assist with optimising function and quality of life, including wheelchairs, walkers, bathroom equipment, augmentative and alternative communication (AAC), non-invasive ventilation (NIV), and feeding tubes.<br/>Aim: To explore experiences of AT provided to people with MND from the perspective of their bereaved carers.<br/><br/>Methods: A survey was conducted with bereaved carers across Australia regarding their experiences of end-of-life care, including provision of AT and their impact on quality of life.<br/><br/>Results: According to bereaved carers, almost all people with MND used devices such as equipment wheelchairs, bathroom equipment, and cough assist, reporting that the equipment improved their quality of life through optimising function, providing a sense of freedom and wellbeing, assisting with caregiving tasks, and facilitating the ability to live at home as long as possible. Two-thirds of people with MND used AAC with most reporting it improved quality of life through allowing them to express their needs and participate in relationships. Participants reported that just over half used a feeding tube, with three-quarters reporting the benefits of stabilising their nutritional status and reducing food anxiety and distress. Similar rates of use and benefit was reported for NIV, particularly for reducing breathlessness and improving sleep.<br/><br/>Conclusion: AT is frequently used by people living with MND. There was strong consensus amongst participants that devices used for functional tasks such as mobility or self-care were routinely used and improved quality of life. Ensuring people with MND continue to have access to timely interdisciplinary assessment and prescription of AT throughout the disease trajectory can foster quality of life at end of life through optimising function, fostering communication and relationships, reducing anxiety, and maintaining nutritional status and the ability to breathe. <br/>