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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]

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]

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]

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]

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]

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]

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.