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AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThis study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported.The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52–73 years; disease duration 6–99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual’s experience of decision-making about PEG. The data were synthesised and analysed thematically.Three main themes and two sub-themes captured participant views on their decision-making. The first, “What matters most to me,” comprised optimising quality of life and maintaining family membership. The second theme explored “Understanding PEG and the clinical pathway.” The third theme was “Thoughts on using a decision aid.”This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG. [ABSTRACT FROM AUTHOR]

There is a need to improve the efficiency of return on research investment and the translation of knowledge into daily practice. Research with end users within a context that concentrates on moving findings into practice settings--that is, translational health systems research (HSR)--is required. This type of research is well suited to tackle multifaceted, nonlinear issues, including those presented in complex, distributed, networked systems. Nevertheless, HSR knowledge management transfer is problematic, as the issues are complex and the evidence base is broad and often disputed due to local variables. To overcome these challenges, collaborative translational HSR is advocated. Likewise, meeting the demand for health professionals with collaborative translational HSR skills and competencies requires knowledge provision with practical tools. We present a study resource--the SCOPE Toolkit (references, HSR LEVELS figure, and the HSR SCOPE tool)--to help health professionals and researchers undertake collaborative translational HSR projects. The study resource addresses the focus, outcomes and implications for practice. The Toolkit can be used by those at all levels of experience, across industry and academic settings, and for learning purposes to successfully conceptualize and implement a collaborative translational HSR project. [ABSTRACT FROM AUTHOR]

An innovative approach to patient management, evidence-based policy development, and clinical drug trials is required to provide personalized care and to improve the likelihood of finding an effective treatment for Motor Neurone Disease (MND). The MiNDAus Partnership builds on and extends existing national collaborations in a targeted approach to improve the standard and coordination of care for people living with MND in Australia, and to enhance the prospects of discovering a cure or treatment. Relationships have been developed between leading clinical and research groups as well as patient-centered organizations, care providers, and philanthropy with a shared vision. MiNDAus has established a corporate structure and meets at least biannually to decide on how best to progress research, drug development, and patient management. The key themes are; (i) empowering patients and their family carers to engage in self-management and ensure personalized service provision, treatment, and policy development, (ii) integration of data collection so as to better inform policy development, (iii) unifying patients and carers with advocacy groups, funding bodies, clinicians and academic institutions so as to inform policy development and research, (iv) coordination of research efforts and development of standardized national infrastructure for conducting innovative clinical MND trials that can be harmonized within Australia and with international trials consortia. Such a collaborative approach is required across stakeholders in order to develop innovative management guidelines, underpinned by necessary and evidence-based policy change recommendations, which, will ensure the best patient care until a cure is discovered. [ABSTRACT FROM AUTHOR]

Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role. [ABSTRACT FROM AUTHOR]