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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]

Public health agencies (PHAs) have increasingly incorporated social media into their communication mix during successive pandemics in the 21st century. However, the quality, timing, and accuracy of their health messages have varied significantly, resulting in mixed outcomes for communication, audience engagement, and pandemic management. This study aimed to identify factors influencing the effectiveness of pandemic-related health messages shared by PHAs on social media and to report their impact on public engagement as documented in the literature. A scoping literature review was conducted following a predefined protocol. An electronic search of 7 relevant databases and 5 grey literature repositories yielded 9,714 papers published between January 2003 and November 2022. Seventy-three papers were deemed eligible and selected for review. The results underscored the insufficiency of social media guidance policies for PHAs. Six themes were identified: message source, message topic, message style, message timing, content credibility and reliability, and message recipient profile. These themes encompassed 20 variables that could inform PHAs’ social media public health communication during pandemics. Additionally, the findings revealed potential interconnectedness among the variables, and this study concluded by proposing a conceptual model that expands upon existing theoretical foundations for developing and evaluating pandemic-related health messaging. [ABSTRACT FROM AUTHOR]

Background Hospitals invest extensive resources in large-scale initiatives to improve patient safety and quality at an organizational level. However, initial success, if any, does not guarantee longer-term improvement. Empirical and theoretical knowledge that informs hospitals on how to attain sustained improvement from large-scale change is lacking. Aim The proposed study aims to examine improvement sustainability of two large-scale initiatives in an Australian tertiary hospital and translate the lessons into strategies for achieving sustained improvement from large-scale change in hospital settings. Design and Methods The study employs a single-site, multiple-case study design to evaluate the initiatives separately and comparatively using mixed methods. Semi-structured staff interviews will be conducted in stratified cohorts across the organizational hierarchy to capture different perspectives from various staff roles involved in the initiatives. The output and impact of the initiatives will be examined through organizational documents and relevant routinely collected organizational indicators. The obtained data will be analyzed thematically and statistically before being integrated for a synergic interpretation. Implications Capturing a comprehensive organizational view of large-scale change, the findings will have the potential to guide the practice and contribute to the theoretical understandings for achieving meaningful and longer-term organizational improvement in patient safety and quality. [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]

Background: Health service administrators are continually investigating new ways to improve the safety and quality of health services. A positive and powerful relationship between employee engagement and patient safety has been suggested in the research literature, and steps can be taken by employers to enhance engagement to improve the safety of health services, particularly considering the COVID-19 pandemic.Methods: A review of peer-reviewed literature relating to the impact of employee engagement on patient safety within health services between January 2015 and May 2021 was conducted using CINAHL, Medline Complete, Scopus, Health Business Elite and Business Source Ultimate databases. A search of grey literature using the BASE database was also completed.Results: 3,693 relevant articles were identified, of which 15 studies were included in this review. Ten articles measured employee engagement using existing, validated tools, whereas patient safety was most frequently assessed through surveys seeking staff member's perceptions of safety or the quality of care they provide. Overall, there appeared to be a positive correlation between employee engagement and patient safety, but the strength of the relationship varied.Conclusion: Anecdotal accounts of improving employee engagement and improving patient safety abound, and the evidence reviewed appears in agreement. However, research into the impact of employee engagement on patient safety is in its early stages. As health service managers consider the best use of funding to support safe and high-quality care, evidence to support the positive impact employee engagement has on patient safety may be useful in managing the fallout from the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [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]

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice. [ABSTRACT FROM AUTHOR]

Rationale, aims, and objectives: Ward rounds present opportunities for medical officers, nurses, allied health clinicians, and patients to interact and plan patient care. A recent literature review found eight types of rounding processes. Different purposes, varying levels of representation from clinical professions, and understanding of each others' roles revealed a complex activity. A shared understanding of rounding processes facilitates positive teamwork and improves patient care. We examined how clinicians perceive the nature of rounding processes they undertake within their practice, multidisciplinary team attendance at rounds, and the effectiveness of team communication. Methods: We surveyed frontline professionals in two acute care and two rehabilitation wards from a metropolitan teaching hospital. There were 77 participants representing medical officers, nurses, and allied health clinicians. Participants selected the type of rounding processes undertaken on their ward from a list of six defined types, then answered questions about who participated in the rounds and their perceptions of the effectiveness of multidisciplinary communication. Survey findings were analysed using descriptive statistics and comparison. Results: Overall, professionals were inconsistent in the identification of number and types of rounds. Participants nominated processes more consistently within individual clinical disciplines than by clinical speciality. Medical officers identified rounds most consistently, while some nurses were unable to identify any rounding processes undertaken. The perceptions clinicians had of their own attendance at rounds differed from that of their colleagues. Despite variation in perceptions about rounds, professionals reported effective multidisciplinary communication patterns overall. Conclusion: Rounds are a common yet complex activity. Rounds are revealed to be a taken‐for‐granted organizational activity with diversity in function, attendance, and participation, yet rounding processes are perceived and experienced differently between health professions. These differences impact on multidisciplinary attendance at rounds amongst peers. Making and communicating explicit round expectations and roles for clinicians supports coordinated teamwork and care planning. [ABSTRACT FROM AUTHOR]

Introduction Motor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them. Methods and analysis A two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them. Ethics and dissemination Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population. [ABSTRACT FROM AUTHOR]

Purpose: Interdisciplinary bedside ward rounds have the capacity to facilitate coordinated interprofessional patient care. To be an effective means of care coordination, clinicians need an explicit understanding of how these rounds contribute to patient care. By identifying benefits and challenges to the effective use of interdisciplinary ward rounds, clinicians create an opportunity to improve interprofessional teamwork, care planning, and coordination of patient care. Methods: A survey was conducted with frontline professionals in two acute care and two rehabilitation wards from a metropolitan teaching hospital. There were 77 participants, representing medical officers, nurses, and allied health clinicians. Questions examined the perceived benefits and challenges of conducting interdisciplinary ward rounds in their units. Survey findings were coded for meaning and then grouped into themes. Results: Benefits revealed a desired care delivery model challenged by the complexities of organizational and professional cultures. The themes of "being on the same page", "focusing on patients", and "holistic care planning" underpinned the ideas of collaboration and improved patient-centred care, that is, benefits to patients. Challenges centred on health professionals' time constraints and the coordination of teams to enable participation in rounds. The themes were more distinct, logistical barriers of "time", "workforce", and "care planning". Conclusion: Overall, clinicians recognise there are greater benefits to IBRs and have a willingness to participate. However, careful consideration is required to introduce and continually achieve the best from IBR as they require changes in organizational context and culture. [ABSTRACT FROM AUTHOR]

Objectives: Men diagnosed with low‐risk prostate cancer are typically eligible for active surveillance of their cancer, involving monitoring for cancer progression and making judgements about the risks of prostate cancer against those of active intervention. Our study examined how risk for prostate cancer is perceived and experienced by patients undergoing active surveillance with their clinicians, how risk is communicated in clinical consultations, and the implications for treatment and care. Method: Participants were nine patients and three clinicians from a university hospital urology clinic. A staged, qualitative, multi‐method data collection approach was undertaken, comprising: observations of consultations; patient and clinician interviews; and patient surveys. The three data sets were analysed separately using thematic analysis and then integrated to give a comprehensive view of patient and clinician views. Results: Thirty data points (eight patient surveys; 10 observations of consultations between patients and clinicians; 10 patient interviews; and two clinician interviews) combined to create a detailed picture of how patients perceived and appraised risk, in three themes of "Making sense of risk", "Talking about risk" and "Responding to risk". Conclusion: Effective risk communication needs to be finely tuned and timed to individual patient's priorities and information requirements. A structured information exchange process that identifies patients' priorities, and details key moments in risk assessment, so that complexities of risk are discussed in ways that are meaningful to patients, may benefit patient care. These findings could inform the development of patient‐centric risk assessment procedures and service delivery models in prostate cancer care more broadly. [ABSTRACT FROM AUTHOR]

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care. Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants' experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach. Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants' use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients' main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease. Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health. People living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel. Patients have indicated willingness to use e-Health applications to improve their access to care. Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning. By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered. [ABSTRACT FROM AUTHOR]

Background: The ward round is an opportunity to plan and deliver patient-centered care. Benefits include an effective and safer clinician-patient relationship, patient empowerment, reduced anxiety and increased trust in the health care system. Factors contributing to patient involvement in ward rounds is shaped by their preferences, ability, and opportunity. Aim: To investigate ward rounds and the patient experience with them, the relationship between the patient and clinicians, and how rounds facilitate collaboration between them. Patients and methods: A multimethod study was conducted in a single Australian facility in acute medicine and rehabilitation specialties. An observational study of ward rounds in each setting was conducted with 14 patients, aged between 55 and 89 years followed by semi-structured interviews conducted with the patients observed. Descriptive and thematic analysis was undertaken. Results: One third of participants had not heard of the term ward round or could describe their purpose. Three main influencers on the patient experience of rounds were: self; the health system; and medical officers. No meaningful difference was found between patients in acute medicine and rehabilitation although all wanted to receive information from the senior medical officers. Patients more familiar with the health system were more active participants and took greater responsibility for their involvement in rounds and described higher satisfaction. Conclusion: There is a level of acceptance within the health system that patients understand what a ward round is. However, their role on the round is complex and this may only be developed through experiencing them. High system users teach themselves to navigate rounding processes to ensure their needs are met. To ensure equity in participation patients should be educated on ward rounds, what to expect and how to they can participate. [ABSTRACT FROM AUTHOR]

Introduction Workspaces are socially constructed environments where social relationships are produced, reproduced, challenged and transformed. Their primary function is to support high-quality service delivery to the benefit of 'patients'. They are also settings where employees can work effectively, in a safe and healthy environment, delivering a high-quality service according to a 'Work-As-Done' rather than a 'Work-As-Imagined' model. However, hospital design is currently based on a managerial understanding of work accomplishments, often falling short of understanding what is actually happening on the ground. Furthermore, the research landscape lacks rigorous assessment of these complex sociological and health research concepts, either within the Australian context where this protocol is set, or internationally. This paper describes an innovative protocol aimed at examining healthcare employees' and organisations' concerns and beliefs in workspace design. It outlines research investigating the effect of workspace use on productivity, health and safety and worker satisfaction, to clarify Work-As-Done, while creating healthy and more fulfilling environments. Methods This is a proof-of-concept study, taking place between June 2018 and April 2019, employing a multimethod, qualitative approach for in-depth assessment of one Australian, private, university hospital environment, using as its 'case' the Gastroenterology Surgical Unit. It involves (1) observations and informal interviews (shadowing) with employees and patients as they traverse hospital spaces and (2) visual data of spatial use. Fieldnotes will be analysed thematically, and visual data analysed using a predefined schematic framework (a visual taxonomy). Overarching themes and categories will be considered corroboratively, mixing visual and textual data to build an iterative and dynamic picture. Ethics and dissemination Ethical considerations will be discussed, while approval has been granted by the University's Human Research Ethics Committee (HREC/5201800282), along with Governance approved by the Health Clinical Research Executive (CRG2018005). Study results will be disseminated through publications, research conferences and public reports. [ABSTRACT FROM AUTHOR]

Objectives Effective researcher assessment is key to decisions about funding allocations, promotion and tenure. We aimed to identify what is known about methods for assessing researcher achievements, leading to a new composite assessment model. Design We systematically reviewed the literature via the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols framework. Data sources All Web of Science databases (including Core Collection, MEDLINE and BIOSIS Citation Index) to the end of 2017. Eligibility criteria (1) English language, (2) published in the last 10 years (2007-2017), (3) full text was available and (4) the article discussed an approach to the assessment of an individual researcher's achievements. Data extraction and synthesis Articles were allocated among four pairs of reviewers for screening, with each pair randomly assigned 5% of their allocation to review concurrently against inclusion criteria. Inter-rater reliability was assessed using Cohen's Kappa (ĸ). The ĸ statistic showed agreement ranging from moderate to almost perfect (0.4848-0.9039). Following screening, selected articles underwent full-text review and bias was assessed. Results Four hundred and seventy-eight articles were included in the final review. Established approaches developed prior to our inclusion period (eg, citations and outputs, h-index and journal impact factor) remained dominant in the literature and in practice. New bibliometric methods and models emerged in the last 10 years including: measures based on PageRank algorithms or 'altmetric' data, methods to apply peer judgement and techniques to assign values to publication quantity and quality. Each assessment method tended to prioritise certain aspects of achievement over others. Conclusions All metrics and models focus on an element or elements at the expense of others. A new composite design, the Comprehensive Researcher Achievement Model (CRAM), is presented, which supersedes past anachronistic models. The CRAM is modifiable to a range of applications. [ABSTRACT FROM AUTHOR]

2017; The 28th International Symposium on ALS/MND. 32 Costello J. (2012) Preserving legacy: A guide to Message Banking a patient's voice. A phase 1 study to evaluate bioequivalence between BHV-0223 40 mg zydis sublingual formulation and riluzole 50mg oral tablet in healthy volunteers. A phase 1 study to evaluate bioequivalence between BHV-0223 40 mg zydis sublingual formulation and riluzole 50mg oral tablet in healthy volunteers. https://www.biohavenpharma.com/sites/default/files/documents/bvh-0223-bioequivalence-aanem-2018.pdf. [Extracted from the article]

Objectives: Apathy is the most common behavioral symptom of amyotrophic lateral sclerosis (ALS). Despite its known impact on caregiver wellbeing, apathy is typically considered a unitary construct making assessment and targeting treatment problematic. The aim of this study was to explore the relationship between caregiver burden and the behavioral, cognitive, and emotional symptoms of apathy in ALS. Methods: Fifty-one ALS patient-caregiver dyads from an ALS/frontotemporal dementia Clinic were assessed with the Apathy Evaluation Scale which measured the cognitive, behavioral, emotional, and nonspecific symptoms of apathy as well as the Zarit Burden Interview, a measure of perceived burden among caregivers of cognitively impaired older adults. The relationship between apathy and caregiver burden were analyzed using univariate and multivariate methods. Results: Apathy was identified in 18% of ALS patients. Greater behavioral (p = 0.011) and nonspecific (p = 0.010) symptoms of apathy exhibited by patients were reported by caregivers with higher levels of burden compared to caregivers with lower levels of burden. Of the cognitive, behavioral, emotional, and nonspecific symptoms of apathy, only the behavioral symptoms explained a significant amount of variance in caregiver burden (p = 0.031). Conclusions: Apathy, specifically the behavioral symptoms of apathy was associated with higher burden of care among ALS caregivers, highlighting the importance of multidimensional assessment of apathy and provision of behavior management support as part of ALS care. [ABSTRACT FROM AUTHOR]

Abstract: Rationale, aims, and objectives: “Implementation science,” the scientific study of methods translating research findings into practical, useful outcomes, is contested and complex, with unpredictable use of results from routine clinical practice and different levels of continuing assessment of implementable interventions. The authors aim to reveal how implementation science is presented and understood in health services research contexts and clarify the foundational concepts: diffusion, dissemination, implementation, adoption, and sustainability, to progress knowledge in the field. Method: Implementation science models, theories, and frameworks are critiqued, and their value for laying the groundwork from which to implement a study's findings is emphasised. The paper highlights the challenges of turning research findings into practical outcomes that can be successfully implemented and the need for support from change agents, to ensure improvements to health care provision, health systems, and policy. The paper examines how researchers create implementation plans and what needs to be considered for study outputs to lead to sustainable interventions. This aspect needs clear planning, underpinned by appropriate theoretical paradigms that rigorously respond to a study's aims and objectives. Conclusion: Researchers might benefit from a return to first principles in implementation science, whereby applications that result from research endeavours are both effective and readily disseminated and where interventions can be supported by appropriate health care personnel. These should be people specifically identified to promote change in service organisation, delivery, and policy that can be systematically evaluated over time, to ensure high‐quality, long‐term improvements to patients' health. [ABSTRACT FROM AUTHOR]

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women’s understandings of risk as they “journeyed” through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited (N = 25) from a large UK Health Board, 2014–2015, completing a “Book of Experience,” and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: “Subjective Understandings of Risk” and “Journeying Toward an Unknown Future.” Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients’ foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future. [ABSTRACT FROM AUTHOR]

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single diseasemodifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients' quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered. [ABSTRACT FROM AUTHOR]

Rationale, aims and objective Accrediting health care organizations against standards is a recognized safety and quality intervention. The credibility of an accreditation programme relies on surveying reliability. We investigated accreditation survey coordinators' perceptions of reliability issues and their continued relevancy, during a period of national accreditation reform. Method In 2013 and 2014, questionnaire surveys were developed using survey coordinators' feedback of their experiences and concerns regarding the accreditation process. Each year, a purpose-designed questionnaire survey was administered during the accrediting agency survey coordinator training days. Results Participants reported that survey reliability was informed by five categories of issues: the management of the accreditation process, including standards and health care organizational issues; surveyor workforce management; survey coordinator role; survey team; and individual surveyors. A new accreditation system and programme did not alter the factors reported to shape survey reliability. However, across the reform period, there was a noted change within each category of the specific issues that were of concern. Furthermore, consensus between coordinators that existed in 2013 appears to have diminished in 2014. Across all categories, in 2014 there was greater diversity of opinion than in 2013. Conclusions The known challenges to the reliability of an accreditation programme retained their potency and relevancy during a period of reform. The diversity of opinion identified across the coordinator workforce could potentially place the credibility and reliability of the new scheme at risk. The study highlights that reliability of an accreditation scheme is an ongoing achievement, not a one-off attainment. [ABSTRACT FROM AUTHOR]

Purpose - The purpose of this paper is to classify and describe the purpose of ward rounds, who attends each round and their role, and participants' perception of each other's role during the respective ward rounds. Design/methodology/approach - A literature review of face-to-face ward rounds in medical wards was conducted. Peer reviewed journals and government publications published between 2000 and 2014 were searched. Articles were classified according to the type of round described in the study. Purposes were identified using keywords in the description of why the round was carried out. Descriptions of tasks and interactions with team members defined participant roles. Findings - Eight round classifications were identified. The most common were the generalised ward; multidisciplinary; and consultant rounds. Multidisciplinary rounds were the most collaborative round. Medical officers were the most likely discipline to attend any round. There was limited reference to allied health clinicians and patient involvement on rounds. Perceptions attendees held of each other reiterated the need to continue to investigate teamwork. Practical implications - A collaborative approach to care planning can occur by ensuring clinicians and patients are aware of different ward round processes and their role in them. Originality/value - Analysis fulfils a gap in the literature by identifying and analysing the different ward rounds being undertaken in acute medical wards. It identifies the complexities in the long established routine hospital processes of the ward round. [ABSTRACT FROM AUTHOR]

Introduction: Motor neuron disease (MND) is a terminal, progressive, multisystem disorder. Well-timed decisions are key to effective symptom management. To date, there are few published decision support tools, also known as decision aids, to guide patients in making ongoing choices for symptom management and quality of life. This protocol is to develop and validate decision support tools for patients and families to use in conjunction with health professionals in MND multidisciplinary care. The tools will inform patients and families of the benefits and risks of each option, as well as the consequences of accepting or declining treatment. Methods and analysis: The study is being conducted from June 2015 to May 2016, using a modified Delphi process. A 2-stage, 7-step process will be used to develop the tools, based on existing literature and stakeholder feedback. The first stage will be to develop the decision support tools, while the second stage will be to validate both the tools and the process used to develop them. Participants will form expert panels, to provide feedback on which the development and validation of the tools will be based. Participants will be drawn from patients with MND, family carers and health professionals, support association workers, peak body representatives, and MND and patient decision-making researchers. Ethics and dissemination: Ethical approval for the study has been granted by Macquarie University Human Research Ethics Committee (HREC), approval number 5201500658. Knowledge translation will be conducted via publications, seminar and conference presentations to patients and families, health professionals and researchers. [ABSTRACT FROM AUTHOR]

Purpose: Health systems are changing at variable rates. Periods of significant change can create new challenges or amplify existing barriers to accreditation program credibility and reliability. The purpose of this paper is to examine, during the transition to a new Australian accreditation scheme and standards, challenges to health service accreditation survey reliability, the salience of the issues and strategies to manage threats to survey reliability.Design/methodology/approach: Across 2013-2014, a two-phase, multi-method study was conducted, involving five research activities (two questionnaire surveys and three group discussions). This paper reports data from the transcribed group discussions involving 100 participants, which was subject to content and thematic analysis. Participants were accreditation survey coordinators employed by the Australian Council on Healthcare Standards.Findings: Six significant issues influencing survey reliability were reported: accreditation program governance and philosophy; accrediting agency management of the accreditation process, including the program's framework; survey coordinators; survey team dynamics; individual surveyors; and healthcare organizations' approach to accreditation. A change in governance arrangements promoted reliability with an independent authority and a new set of standards, endorsed by Federal and State governments. However, potential reliability threats were introduced by having multiple accrediting agencies approved to survey against the new national standards. Challenges that existed prior to the reformed system remain.Originality/value: Capturing lessons and challenges from healthcare reforms is necessary if improvements are to be realized. The study provides practical and theoretical strategies to promote reliability in accreditation programs. [ABSTRACT FROM AUTHOR]

Objective:Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression.Method:Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale–21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS–R).Results:At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS–R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ2(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05.Significance of Results:The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers. [ABSTRACT FROM PUBLISHER]

Background: Hospital accreditation programs are internationally widespread and consume increasingly scarce health resources. However, we lack tools to consistently identify suitable indicators to assess and monitor accreditation outcomes. We describe the development and validation of such a tool. Results: Using Australian accreditation standards as our reference point we: reviewed the research evidence for potential indicators; looked for links with existing external indicators; and assessed relevant state and federal policies. We allocated provisional scores, on a five point Likert scale, to the five accountability criteria in the tool: research; accuracy; proximity; no adverse effects; and specificity. An expert panel validated the use of the purpose designed indicator assessment tool. The panel identified hand hygiene compliance rates as a suitable process indicator, and hospital acquired Staphylococcus aureus infection (SAB) rates as an outcome indicator, with the hypothesis that improved hand hygiene compliance rates and lower SAB rates would correlate with accreditation performance. Conclusions: This new tool can be used to identify, analyse, and compare accreditation indicators. Using infection control indicators such as hand hygiene compliance and SAB rates to measure accreditation effectiveness has merit, and their efficacy can be determined by comparing accreditation scores with indicator outcomes. To verify the tool as a robust instrument, testing is needed in other health service domains, both in Australia and internationally. This tool provides health policy makers with an important means for assessing the accreditation programs which form a critical part of the national patient safety and quality framework. [ABSTRACT FROM AUTHOR]

Background: The study objective was to identify and describe the process, resources and expertise required for the revision of accreditation standards, and report outcomes arising from such activities. Methods: Secondary document analysis of materials from an accreditation standards development agency. The Royal Australian College of General Practitioners’ (RACGP) documents, minutes and reports related to the revision of the accreditation standards were examined. Results: The RACGP revision of the accreditation standards was conducted over a 12 month period and comprised six phases with multiple tasks, including: review methodology planning; review of the evidence base and each standard; new material development; constructing field trial methodology; drafting, trialling and refining new standards; and production of new standards. Over 100 individuals participated, with an additional 30 providing periodic input and feedback. Participants were drawn from healthcare professional associations, primary healthcare services, accreditation agencies, government agencies and public health organisations. Their expertise spanned: project management; standards development and writing; primary healthcare practice; quality and safety improvement methodologies; accreditation implementation and surveying; and research. The review and development process was shaped by five issues: project expectations; resource and time requirements; a collaborative approach; stakeholder engagement; and the product produced. The RACGP evaluation was that participants were positive about their experience, the standards produced and considered them relevant for the sector. Conclusions: The revision of accreditation standards requires considerable resources and expertise, drawn from a broad range of stakeholders. Collaborative, inclusive processes that engage key stakeholders helps promote greater industry acceptance of the standards. [ABSTRACT FROM AUTHOR]

Objectives: The study aims are twofold. First, to investigate the suitability of hand hygiene as an indicator of accreditation outcomes and, second, to test the hypothesis that hospitals with better accreditation outcomes achieve higher hand hygiene compliance rates. Design: A retrospective, longitudinal, multisite comparative survey. Setting: Acute public hospitals in New South Wales, Australia. Participants: 96 acute hospitals with accreditation survey results from two surveys during 2009-2012 and submitted data for more than four hand hygiene audits between 2010 and 2013. Outcomes: Our primary outcome comprised observational hand hygiene compliance data from eight audits during 2010-2013. The explanatory variables in our multilevel regression model included: accreditation outcomes and scores for the infection control standard; timing of the surveys; and hospital size and activity. Results: Average hand hygiene compliance rates increased from 67.7% to 80.3% during the study period (2010-2013), with 46.7% of hospitals achieving target compliance rates of 70% in audit 1, versus 92.3% in audit 8. Average hand hygiene rates at small hospitals were 7.8 percentage points (pp) higher than those at the largest hospitals ( p<0.05). The association between hand hygiene rates, accreditation outcomes and infection control scores is less clear. Conclusions: Our results indicate that accreditation outcomes and hand hygiene audit data are measuring different parts of the quality and safety spectrum. Understanding what is being measured when selecting indicators to assess the impact of accreditation is critical as focusing on accreditation results would discount successful hand hygiene implementation by smaller hospitals. Conversely, relying on hand hygiene results would discount the infection control related research and leadership investment by larger hospitals. Our hypothesis appears to be confounded by an accreditation programme that makes it more difficult for smaller hospitals to achieve high infection control scores. [ABSTRACT FROM AUTHOR]

Family carers of patients with amyotrophic lateral sclerosis (ALS) are presumed to have frequent involvement in decision-making for symptom management and quality of life. To better understand and improve decision-making, we investigated the range and extent of carer participation in decision-making. By focusing on the perspectives of ALS support carers, the study aimed to explore carer participation in decision-making, to identify carer roles, and determine the facilitators and barriers to carer participation in decision-making for ALS multidisciplinary care. Participants and methods: An exploratory, in-depth study was conducted with eight carers of ALS patients from two specialized ALS multidisciplinary clinics. Carers participated in semi-structured interviews that were audio recorded and transcribed then coded and analyzed for emergent themes. Results: Carers made a significant contribution to ALS decision-making. Their roles were: promoting the patient voice, promoting patient health literacy, and providing emotional support and logistical assistance. Facilitators of carer participation in decision-making were perceived to be: health professional endorsement of patients' decision-making style; access to credible information sources; evidence-based information from the ALS clinic, ALS support association, and health practitioners; supportive relationships with family and friends; spiritual faith; ease of contact with ALS services; and availability of physical and practical support for carers. Barriers to carer participation included: changes to patient communication and cognition; conflict between respect for patients' independence and patients' best interest; communication breakdown between patient, carer, and service providers; the confronting nature of disease information; credibility of Internet sites; carer coping strategies; lack of support for the carer; and the burden of care. Conclusion: Carers enhance ALS patient-centered care through their participation in decision-making. They collaborate with patients and health professionals to form a decision-making triad within specialized multidisciplinary ALS clinical care. Nevertheless, health professional engagement with carers as collaborative partners is acknowledged to be a significant challenge. [ABSTRACT FROM AUTHOR]

Background: Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients' ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS. Methods: An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes. Results: Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients' reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients' personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs. Conclusion: Decision-making for symptom management and quality of life in ALS care is enhanced when the patient's personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making. Methods: Thirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically. Results: Respondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information. Conclusion: Patient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives. [ABSTRACT FROM AUTHOR]

Health system improvement (HSI) is focused on systematic changes to organisational processes and practices to improve the efficient delivery of safe care and quality outcomes. Guidelines that specify how interprofessional teams conduct HSI and knowledge translation are needed. We address this urgent requirement providing health professional teams with resources and strategies to investigate, analyse and implement system-level improvements. HSI encompasses similar, yet different, inter-related activities across a continuum. The continuum spans three categories of activities, such as quality improvement, health management research and translational health management research. A HSI decision making guide and checklist, comprising six-steps, is presented that can be used to select and plan projects. This resource comprises six interconnected steps including, defining the activity, project outcome, aim, use of evidence, appropriate methodology and implementation plan. Each step has been developed focusing on an objective, actions and resources. HSI activities provide a foundation for interprofessional collaboration, allowing multiple professions to create, share and disseminate knowledge for improved healthcare. When planned and executed well, HSI projects assist clinical and corporate staff to make evidence-informed decisions and directions for the benefit of the service, organisation and sector., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Long-term sustained improvement following implementation of hospital-wide quality and safety initiatives is not easily achieved. Comprehensive theoretical and practical understanding of how gained improvements can be sustained to benefit safe and high-quality care is needed. This review aimed to identify enabling and hindering factors and their contributions to improvement sustainability from hospital-wide change to enhance patient safety and quality., Methods: A systematic scoping review method was used. Searched were peer-reviewed published records on PubMed, Scopus, World of Science, CINAHL, Health Business Elite, Health Policy Reference Centre and Cochrane Library and grey literature. Review inclusion criteria included contemporary (2010 and onwards), empirical factors to improvement sustainability evaluated after the active implementation, hospital(s) based in the western Organisation for Economic Co-operation and Development countries. Numerical and thematic analyses were undertaken., Results: 17 peer-reviewed papers were reviewed. Improvement and implementation approaches were predominantly adopted to guide change. Less than 6 in 10 (53%) of reviewed papers included a guiding framework/model, none with a demonstrated focus on improvement sustainability. With an evaluation time point of 4.3 years on average, 62 factors to improvement sustainability were identified and emerged into three overarching themes: People, Process and Organisational Environment. These entailed, as subthemes, actors and their roles; planning, execution and maintenance of change; and internal contexts that enabled sustainability. Well-coordinated change delivery, customised local integration and continued change effort were three most critical elements. Mechanisms between identified factors emerged in the forms of Influence and Action towards sustained improvement., Conclusions: The findings map contemporary empirical factors and their mechanisms towards change sustainability from a hospital-wide initiative to improve patient safety and quality. The identified factors and mechanisms extend current theoretical and empirical knowledgebases of sustaining improvement particularly with those beyond the active implementation. The provided conceptual framework offers an empirically evidenced and actionable guide to assist sustainable organisational change in hospital settings., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The study of safety culture and its relationship to patient care have been challenged by variation in definition, dimensionality and methods of assessment. This systematic review aimed to map methods to assess safety culture in hospitals, analyse the prevalence of these methods in the published research literature and examine the dimensions of safety culture captured through these processes., Methods: We included studies reporting on quantitative, qualitative and mixed methods to assess safety culture in hospitals. The review was conducted using four academic databases (PubMed, CINAHL, Scopus and Web of Science) with studies from January 2008 to May 2020. A formal quality appraisal was not conducted. Study purpose, type of method and safety culture dimensions were extracted from all studies, coded thematically, and summarised narratively and using descriptive statistics where appropriate., Results: A total of 694 studies were included. A third (n=244, 35.2%) had a descriptive or exploratory purpose, 225 (32.4%) tested relationships among variables, 129 (18.6%) evaluated an intervention, while 13.8% (n=96) had a methodological focus. Most studies exclusively used surveys (n=663; 95.5%), with 88 different surveys identified. Only 31 studies (4.5%) used qualitative or mixed methods. Thematic analysis identified 11 themes related to safety culture dimensions across the methods, with 'Leadership' being the most common. Qualitative and mixed methods approaches were more likely to identify additional dimensions of safety culture not covered by the 11 themes, including improvisation and contextual pressures., Discussion: We assessed the extent to which safety culture dimensions mapped to specific quantitative and qualitative tools and methods of assessing safety culture. No single method or tool appeared to measure all 11 themes of safety culture. Risk of publication bias was high in this review. Future attempts to assess safety culture in hospitals should consider incorporating qualitative methods into survey studies to evaluate this multi-faceted construct., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Ineffective knowledge dissemination contributes to clinical practice and service improvements not being realised. Meaningful knowledge translation can occur through the understanding and matching of appropriate communication mediums that are relevant for different stakeholders or audiences. To this end, we present a dissemination instrument, the 'REAch and Diffusion of health iMprovement Evidence' (README) checklist, for the communication of research findings, integrating both traditional and newer communication mediums. Additionally, we propose a 'Strategic Translation and Engagement Planning' (STEP) tool, for use when deciding which mediums to select. The STEP tool challenges the need for communicating complex and simple information against the desire for passive or active stakeholder interaction. Used collaboratively by academics and health professionals, README and STEP can promote co-production of research, subsequent diffusion of knowledge, and develop the capacity and skills of all stakeholders., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Gastrostomy decision making is a complicated, multifaceted process for people with motor neuron disease (MND). This study explored demographic and disease-related factors that may impact on gastrostomy uptake; and reasons why people with MND accepted or declined gastrostomy, with a focus on how perceptions of swallowing and nutrition may influence decision making., Design: Prospective, cross sectional, mixed methods., Setting: An Australian multidisciplinary, specialty MND Service., Participants: 33 patients were recommended gastrostomy by the treating medical specialist. 16 of 33 were invited to participate in the prospective decision making study; of whom 10 provided informed consent., Primary and Secondary Outcome Measures: Demographic and disease-related factors contributing to uptake are described. A stepped approach was applied to gain a comprehensive understanding of why people with MND accept or decline gastrostomy. Instruments included standardised assessments, nutrition survey and semistructured interview. Data were collected at three separate appointments, spanning a 3-week period., Results: Gastrostomy uptake was 73% following medical specialist recommendation. Participants took days, weeks or months to consider their preferences, with lengthy hospital waiting times for the procedure. Gender, site of onset and rate of disease progression were observed to contribute to uptake. Age and symptom duration did not. Integration of quantitative and qualitative data suggests that patient perceptions of swallowing and nutrition contribute to gastrostomy acceptance; however, the decision making process is heterogeneous and these factors may not be the sole or primary reasons for acceptance. Other reported factors included: reducing carer burden, improving quality of life, increasing independence, continuing participation in social outings and gaining control., Conclusions: Future research may give greater insight into how healthcare organisations can better facilitate gastrostomy decision making, to meet the needs of people living with MND. Larger, prospective, multisite studies may build on these findings to better inform clinical guidelines and minimise the impacts of delayed gastrostomy insertion., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)