The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.

Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC). This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted. The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDC per se adds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be. Educational aims: To highlight the complexities surrounding respiratory care in ALS.To alert clinicians to the risk that complexity of ALS care may modify the effectiveness of any specific, evidence-based therapy for ALS.To describe the importance of person-centred care and shared decision-making in optimising care in ALS.

Looking Back, Looking Forward: A Study Protocol for a Mixed-Methods Multiple-Case Study to Examine Improvement Sustainability of Large-Scale Initiatives in Tertiary Hospitals.

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.

Public health agencies' use of social media for communication during pandemics: a scoping review of the literature.

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.

Implementing health system improvement: resources and strategies for interprofessional teams.

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.

Sustaining improvement of hospital-wide initiative for patient safety and quality: a systematic scoping review.

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.

Exploring the impact of employee engagement and patient safety.

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 coronavirus disease 2019 (COVID-19) pandemic. OBJECTIVE: The aim of this review was to explore the current literature on the impact of employee engagement on patient safety. 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 Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline Complete, Scopus, Health Business Elite and Business Source Ultimate databases. A search of grey literature using the Bielefeld Academic Search Engine database was also completed. RESULTS: Of relevant articles, 3693 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.

MiNDAUS partnership: a roadmap for the cure and management of motor Neurone disease.

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.

Dimensions of safety culture: a systematic review of quantitative, qualitative and mixed methods for assessing safety culture in hospitals.

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.

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective.

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.

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease.

BACKGROUND: 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.

Improving knowledge translation for increased engagement and impact in healthcare.

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.

Exploring interdisciplinary teamwork to support effective ward rounds.

PURPOSE: This paper aims to explore if health professionals share understanding of teamwork that supports collaborative ward rounds. DESIGN/METHODOLOGY/APPROACH: A purpose-designed survey was conducted in two acute medical and two rehabilitation wards from a metropolitan teaching hospital. Medical officers, nurses and allied health professionals participated. To understand characteristics that support collaborative ward rounds, questions developed from literature and industry experience asked: what are the enablers and challenges to teamwork; and what are clinicians' experiences of positive teamwork? Descriptive and thematic analyses were applied to the dimensions of effective teamwork as a framework for deductive coding. FINDINGS: Seventy-seven clinicians participated (93% response rate). Findings aligned with dimensions of teamwork framework. There was no meaningful difference between clinicians or specialty. Enablers to teamwork were: effective communication, shared understanding of patient goals, and colleague's roles. Challenges were ineffective communication, individual personalities, lack of understanding about roles and responsibilities, and organisational structure. Additional challenges included: time; uncoordinated treatment planning; and leadership. Positive teamwork was influenced by leadership and team dynamics. PRACTICAL IMPLICATIONS: Ward rounds benefit from a foundation of collaborative teamwork. Different dimensions of teamwork present during ward rounds support clinicians' shared understanding of roles, expectations and communication. ORIGINALITY/VALUE: Rounds such as structured rounding, aim to improve teamwork. Inverting this concept to first develop effective collaboration will support team adaptability and resilience. This enables teams to transition between the multiple rounding processes undertaken in a single ward. The emphasis becomes high-quality teamwork rather than a single rounding process.

Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study.

BACKGROUND: 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.

How can we improve patient-centered care of motor neuron disease?

This perspectives paper discusses patient-centered care for people living with motor neuron disease. We identify challenges and offer solutions from the patient-centered care literature for this population in frontline care, service delivery, research and health system organization. Examples from Australian and international motor neuron disease care are used to illustrate interrelated issues for practice and policy.

Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients' decision making.

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.

Clinicians' perceptions of rounding processes and effectiveness of clinical communication.

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.

How Do Interprofessional Healthcare Teams Perceive the Benefits and Challenges of Interdisciplinary Ward Rounds.

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.

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol.

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.

Patients, health professionals, and the health system: influencers on patients' participation in ward rounds.

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.

CMS-01 Genetic testing for familial amyotrophic lateral sclerosis (ALS): insights and challenges.

Background: Pathogenic variants in ALS genes are known to be present in up to 70% of familial and 10% of apparently sporadic ALS cases, and can be associated with risks for ALS only, or risks for other neurodegenerative diseases (eg. frontotemporal dementia). While there are no changes to medical management for patients confirmed as pathogenic variant carriers, genetic testing may be important for future drug trials. Confirmation of a pathogenic variant also provides relatives with the opportunity to consider predictive and/or reproductive genetic testing. Genetic counselling is an important aspect of testing decision-making as it enables individuals to make informed decisions about genetic testing while minimising adverse psychological, ethical and legal outcomes. Few studies have explored how individuals decide whether to pursue testing, nor the needs and experiences of familial ALS families.Objective: To identify factors that influence patient and family member decision-making about genetic testing for ALS genes, assess the impact of familial disease on the patient and their family, and identify information and support needs.Methods: In-depth, semi-structured interviews with individuals from Australian ALS families with known pathogenic gene variants explored experiences of familial ALS, and factors that influenced genetic testing decision-making. Interviews were analysed using an inductive approach.Results: Thirty-four individuals from 24 families were interviewed and included patients (n = 4), spouses (n = 4), and asymptomatic at-risk relatives (n = 26). Life stage, experience of disease, costs, research opportunities, and attitudes to familial ALS and/or reproductive options influenced decision-making. Some patients and relatives experienced difficulty gaining accurate information from their health professionals about the costs and implications of genetic counselling or testing, resulting in a reluctance to proceed.Discussion and conclusion: This study provides new insight into the Australian experience of genetic testing and counselling for familial ALS. It highlights the need to work together with other health professionals to ensure the complexities of genetic testing decision-making, and referral pathways are better understood.