Operationalisation of health equity principles in physiotherapy hospital triage policies.

BACKGROUND: Healthcare triage policies are vital for allocating limited resources fairly and equitably. Despite extensive studies of healthcare equity, consensus on the applied definition of equity in triage remains elusive. This study aimed to investigate how the principles of equity are operationalised in Australian hospital physiotherapy triage tools to guide resource distribution. METHODS: A retrospective, qualitative content analysis of 13 triage policies from 10 hospitals across Australia was conducted. Triage policies from both inpatient and outpatient settings were sourced. Data were coded deductively using the five discrete domains of the multi-faceted operational definition of health equity posited by Lane et al. (2017): 1) point of equalisation in the health service supply/access/outcome chain, 2) need or potential to benefit, 3) groupings of equalisation, 4) caveats to equalisation, 5) close enough is good enough. Descriptive summative statistics were used to analyse and present the frequency of reported equity domains. RESULTS: Within the included triage tools, four out of five domains of equity were evident in the included documents to guide decision making. Allocation based on perceived patient need and overall health outcomes were the central guiding principles across both inpatient and outpatient settings. Equal provision of service relative to patient need and reducing wait times were also prioritised. However, explicit inclusion of certain equity domains such as discrimination, ensuring equal capability to be healthy and other patient factors was limited. CONCLUSIONS: Physiotherapy triage policies consider various domains of equity to guide resource allocation decisions. Policymakers and service providers can use the insights gained from this study to review the application and operationalisation of equity principles within their healthcare systems through mechanisms such as patient triage tools.

Strategies to improve care for older adults who present to the emergency department: a systematic review.

BACKGROUND: The aim of this systematic review was to examine the relationship between strategies to improve care delivery for older adults in ED and evaluation measures of patient outcomes, patient experience, staff experience, and system performance. METHODS: A systematic review of English language studies published since inception to December 2022, available from CINAHL, Embase, Medline, and Scopus was conducted. Studies were reviewed by pairs of independent reviewers and included if they met the following criteria: participant mean age of ≥ 65 years; ED setting or directly influenced provision of care in the ED; reported on improvement interventions and strategies; reported patient outcomes, patient experience, staff experience, or system performance. The methodological quality of the studies was assessed by pairs of independent reviewers using The Joanna Briggs Institute critical appraisal tools. Data were synthesised using a hermeneutic approach. RESULTS: Seventy-six studies were included in the review, incorporating strategies for comprehensive assessment and multi-faceted care (n = 32), targeted care such as management of falls risk, functional decline, or pain management (n = 27), medication safety (n = 5), and trauma care (n = 12). We found a misalignment between comprehensive care delivered in ED for older adults and ED performance measures oriented to rapid assessment and referral. Eight (10.4%) studies reported patient experience and five (6.5%) reported staff experience. CONCLUSION: It is crucial that future strategies to improve care delivery in ED align the needs of older adults with the purpose of the ED system to ensure sustainable improvement effort and critical functioning of the ED as an interdependent component of the health system. Staff and patient input at the design stage may advance prioritisation of higher-impact interventions aligned with the pace of change and illuminate experience measures. More consistent reporting of interventions would inform important contextual factors and allow for replication.

Determining the role and responsibilities of the community epilepsy nurse in the management of epilepsy.

AIMS AND OBJECTIVES: The aim of this study is to enhance the understanding of the core elements and influencing factors on the community-based epilepsy nurse's role and responsibilities. BACKGROUND: Internationally, epilepsy nurse specialists play a key role in providing person-centred care and management of epilepsy but there is a gap in understanding of their role in the community. DESIGN: A national three-stage, mixed-method study was conducted. METHODS: One-on-one, in-depth semi-structured qualitative interviews were conducted online with 12 community-based epilepsy nurses (Stage 1); retrospective analysis of data collected from the National Epilepsy Line, a nurse-led community helpline (Stage 2); and focus group conducted with four epilepsy nurses, to delve further into emerging findings (Stage 3). A thematic analysis was conducted in Stages 1 and 3, and a descriptive statistical analysis of Stage 2 data. Consolidated Criteria for Reporting Qualitative studies checklist was followed for reporting. RESULTS: Three key themes emerged: (1) The epilepsy nurse career trajectory highlighted a lack of standardised qualifications, competencies, and career opportunities. (2) The key components of the epilepsy nurse role explored role diversity, responsibilities, and models of practice in the management of living with epilepsy, and experiences navigating complex fragmented systems and practices. (3) Shifting work practices detailed the adapting work practices, impacted by changing service demands, including COVID-19 pandemic experiences, role boundaries, funding, and resource availability. CONCLUSION: Community epilepsy nurses play a pivotal role in providing holistic, person-centred epilepsy management They contribute to identifying and addressing service gaps through innovating and implementing change in service design and delivery. RELEVANCE TO CLINICAL PRACTICE: Epilepsy nurses' person-centred approach to epilepsy management is influenced by the limited investment in epilepsy-specific integrated care initiatives, and their perceived value is impacted by the lack of national standardisation of their role and scope of practice. NO PATIENT OR PUBLIC CONTRIBUTION: Only epilepsy nurses' perspectives were sought.

Barriers to and Facilitators of Implementing Guidelines for Detecting Familial Hypercholesterolaemia in Australia.

BACKGROUND: Familial hypercholesterolaemia (FH) is a genetic condition that is a preventable cause of premature cardiovascular morbidity and mortality. High-level evidence and clinical practice guidelines support preventative care for people with FH. However, it is estimated that less than 10% of people at risk of FH have been detected using any approach across Australian health settings. The aim of this study was to identify the implementation barriers to and facilitators of the detection of FH in Australia. METHODS: Four, 2-hour virtual focus groups were facilitated by implementation scientists and a clinicians as part of the 2021 Australasian FH Summit. Template analysis was used to identify themes. RESULTS: There were 28 workshop attendees across four groups (n=6-8 each), yielding 13 barriers and 10 facilitators across three themes: (1) patient related, (2) provider related, and (3) system related. A "lack of care pathways" and "upskilling clinicians in identifying and diagnosing FH" were the most interconnected barriers and facilitators for the detection of FH. CONCLUSIONS: The relationships between barriers and facilitators across the patient, provider, and system themes indicates that a comprehensive implementation strategy is needed to address these different levels. Future research is underway to develop a model for implementing the Australian FH guidelines into practice.

Health Promotion and Wellness in Neurologic Physical Therapy: Strategies to Advance Practice.

BACKGROUND AND PURPOSE: Neurologic physical therapy (PT) can assist people with neurologic conditions and injuries to optimize their health and well-being by addressing barriers at the individual, relationship, community, and societal levels. The purpose of this special interest article is to provide consensus-driven strategies to address barriers to implementing health promotion and wellness (HPW)-related neurologic PT practice. SUMMARY OF KEY POINTS: Environmental scan, literature review, and expert input were used to determine barriers and develop strategies. Barriers include lack of time; low knowledge, self-efficacy, and awareness; client complexity; and lack of HPW resources; as well as concerns regarding payment and scope of practice. Four key strategies emerged: (1) develop and disseminate a consensus-based scope of practice for HPW in neurologic PT; (2) increase knowledge of resources related to HPW; (3) promote delivery models for HPW-related neurologic PT; and (4) encourage advocacy, community building and partnership along the continuum of care. RECOMMENDATIONS FOR CLINICAL PRACTICE: Clinicians should practice to their full scope of HPW-related PT practice. This includes optimizing movement, including physical activity and fitness, as well as reinforcing the importance of healthy sleep, nutrition, stress, and smoking cessation. These activities address primary, secondary, and tertiary prevention. Clinicians are encouraged to report their experiences with HPW-focused delivery models and outcomes. Additional research is needed to understand the full impact of HPW on PT practice (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A364).

Peer support and social network groups among people living with epilepsy: A scoping review.

BACKGROUND: Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings. METHODS: A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings. RESULTS: A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers. CONCLUSIONS: This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.

Identification and referral of patients with refractory epilepsy from the primary to the tertiary care interface in New South Wales, Australia.

OBJECTIVES: This mixed-method feasibility study conducted in New South Wales (NSW), Australia, aimed to explore clinical practices around the identification of patients with refractory epilepsy and referral from primary care to Tertiary Epilepsy Centers. The perceptions of general practitioners, neurologists, and adults living with refractory epilepsy were considered. METHODS: Fifty-two data collection events were achieved through 22 semi-structured interviews with six neurologists and 12 adults who currently have, or have had refractory epilepsy, and four family members, 10 clinical observations of patient consultations and 20 surveys with general practitioners. A thematic analysis was conducted on the qualitative data alongside assessment of observational fieldnotes and survey data. FINDINGS: Two main themes emerged: 1) Patient healthcare pathways and care experiences highlighted the complex and deeply contextualized experiences of both patients and healthcare professionals, from first identification of people's seizures, in primary and community care settings, to referral to Tertiary Epilepsy Centers, shedding light on a fragmented, nonstandardized referral process, influenced by both individual and shared-care practices. 2) Factors impacting referrals and patient pathways indicated that onward referral to a Tertiary Epilepsy Center is affected by the knowledge, or the lack thereof, of healthcare professionals regarding treatment options. Barriers include limited person-centered care, shared decision-making, and refractory epilepsy education for healthcare professionals, which can delay patients' disease identification and can hinder speedy referral pathways and processes, in Australia for up to 17 years. In addition, person-centered communication around care pathways is affected by relationships between clinicians, patients, and family members. CONCLUSION: This study has identified a noticeable lack of standardized care across epilepsy-related healthcare sectors, which recognizes a need for developing and implementing clearer epilepsy-related guidelines and Continuing Professional Development in the primary and community care settings. This, however, requires greater collaboration and commitment in the primary, community, and tertiary care sectors to address the ongoing misconceptions around professional roles and responsibilities to optimize shared-care practices. Ultimately, prioritizing person-centered care on both patients' and professionals' agendas, in order to improve satisfaction with care experiences of people living with complex epilepsy.

What do children need to know about dementia? The perspectives of children and people with personal experience of dementia.

ABSTRACTBackground:The vision for dementia-friendly communities is challenged by limited public awareness and stigma about dementia. The study aim was to elicit stakeholder priorities for the message content of an education program to improve dementia awareness among youth; specifically, what do children need to know about dementia? METHODS: A qualitative inquiry using interviews and focus groups was used. Purposive sampling achieved maximum variation in dementia experience and participant characteristics. Focus groups with Scouts in the community aged 9-12 years old (n = 22) used innovative techniques to explore children's attitudes towards people with dementia. Participants with personal experience of dementia were five people with early-stage dementia; 12 adult primary carers; four non-primary carers; and six grandchildren of a person with dementia. They were asked what is important for children to understand about dementia and what attitudes they may like an education program to confer. Content analysis was performed using NVivo10. RESULTS: Strong themes to emerge were that children need to know the whole truth about dementia; that individuals with dementia are "still people," that it is "not the fault" of the person with dementia; and that dementia is different and typically unpredictable for everyone. Discussions also indicated a need to educate children about ways to relate to a person with dementia, and to appreciate "positives" within a relationship. CONCLUSIONS: Children are our future citizens. Developing an education program for children with this message content may be fundamental to de-stigmatizing dementia and laying the foundation to dementia-friendly communities.

The Kids Insight into Dementia Survey (KIDS): development and preliminary psychometric properties.

OBJECTIVES: Children may have a foundational role in efforts to raise community awareness about dementia. There is some qualitative work with children with a relative with dementia, but little work into the insights of children as general citizens without affected family. One issue is an absence of measurement tools; thus the study aimed to design and pilot a psychometrically sound self-report measure of dementia attitudes for children. METHOD: Using a multi-staged scale development process, stakeholder and expert input informed a 52-item Kids Insight into Dementia Survey (KIDS). After a pretest of KIDS with 21 Australian schoolchildren aged 10-12 years, exploratory factor analysis and reliability and validity testing were run on a revised KIDS with data from 203 similar-aged schoolchildren. RESULTS: The KIDS was reduced from 52 to 14 items, and a three-factor solution identified: 'Personhood,' 'Stigma,' and 'Dementia Understanding.' A strong positive correlation with an adult measure of dementia attitudes (r = .76) and a moderate positive correlation with a child measure of attitudes towards older adults (r = .47) indicated good concurrent validity. Internal consistency of .83 indicated good reliability. CONCLUSION: Results support the use of KIDS as a tool to measure children's insight into dementia, and to evaluate dementia education initiatives targeting the youth.

Empowerment of young people who have a parent living with dementia: a social model perspective.

BACKGROUND: Socially constructed disablement has marginalized young people in families where a parent has younger onset dementia (YOD). This has contributed to inadequate societal support for their complex situation. Impacts on such young people include significant involvement with mental health services for themselves. In this paper, we explored the young people's lived experiences in these families and the influencing factors to enable these young people to be included and supported within their community. METHODS: In this qualitative research study, the social model of disability was used as the theoretical framework in conducting a thematic analysis of interviews with 12 participants. RESULTS: Three themes emerged; invisibility highlighting the issues of marginalization; connectivity foregrounding the engagement of young people with family, friends and their social networks, and being empowered through claiming their basic human right to receive the age appropriate support they needed. CONCLUSION: The current plight of young people living with a parent with YOD demands a fundamental shift by society in developing inclusive cross-sectorial cooperation linking service providers across youth and dementia sectors. This requires working in partnership with the service users responding to the identified needs of individual family members.

A Pain in the Pilot.

Multi-agency guidelines recommend use of a functional pain assessment tool as an objective assessment of pain, rather than relying on a subjective verbal rating scale. This project was created to address issues managing Patients' pain in inpatient settings. The project aimed to answer: 'How can we adopt the use of a Functional Pain Assessment into our clinical practice, optimising its effectiveness for ALL patient groups in our inpatient ward areas?' Output from multi-disciplinary working group: two electronic documents were created - Pain Assessment Tool and Pain Observations Chart: for staff to document routine pain observations. Five wards participated in the pilot study, with training/support provided. Result: Staff and patients preferred the new approach, compared to previous pain documentation method. However, documentation compliance was not as good as expected. Pilot proved the concept, documents are effective in pain management, but more education and support is needed to embed cultural shift.

Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery.

Introduction: Epilepsy is the most common neurological condition globally. Integrating health and social care is fundamental in epilepsy management, but the scope of progress in this area is unclear. This scoping review aimed to capture the range and type of integrated care components and models in epilepsy management. Methods: Four databases were searched for articles published since 2010 that reported on integrated care in epilepsy. Data were extracted and synthesised into components of integrated care that had been implemented or recommended only. Models of integrated care were identified, and their components tabulated. Results: Fifteen common and interrelated components of integrated care emerged that were aligned with four broad areas: healthcare staff and pathways (e.g., epilepsy nurses); tasks and services (e.g., care coordination); education and engagement (e.g., shared decision making); and technology for diagnosis and communication (e.g., telehealth). Twelve models of integrated care were identified; seven were implemented and five were recommended. Discussion: There is a growing evidence-base supporting integrated, person-centred epilepsy care, but implementation is challenged by entrenched silos, underdeveloped pathways for care, and deficits in epilepsy education. Conclusion: Integrating epilepsy care relies on changes to workforce development and policy frameworks to support whole-of-system vision for improving care.

Improving dementia and palliative care through the co-design of an integrated model of care.

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.

Autonomous Control of Music to Retrain Walking After Stroke.

BACKGROUND: Post-stroke care guidelines highlight continued rehabilitation as essential; however, many stroke survivors cannot participate in outpatient rehabilitation. Technological advances in wearable sensing, treatment algorithms, and care delivery interfaces have created new opportunities for high-efficacy rehabilitation interventions to be delivered autonomously in any setting (ie, clinic, community, or home). METHODS: We developed an autonomous rehabilitation system that combines the closed-loop control of music with real-time gait analysis to fully automate patient-tailored walking rehabilitation. Specifically, the mechanism-of-action of auditory-motor entrainment is applied to induce targeted changes in the post-stroke gait pattern by way of targeted changes in music. Using speed-controlled biomechanical and physiological assessments, we evaluate in 10 individuals with chronic post-stroke hemiparesis the effects of a fully-automated gait training session on gait asymmetry and the energetic cost of walking. RESULTS: Post-treatment reductions in step time (Δ: -12 ± 26%, P = .027), stance time (Δ: -22 ± 10%, P = .004), and swing time (Δ: -15 ± 10%, P = .006) asymmetries were observed together with a 9 ± 5% reduction (P = .027) in the energetic cost of walking. Changes in the energetic cost of walking were highly dependent on the degree of baseline energetic impairment (r =- .90, P < .001). Among the 7 individuals with a baseline energetic cost of walking larger than the normative value of healthy older adults, a 13 ± 4% reduction was observed after training. CONCLUSIONS: The closed-loop control of music can fully automate walking rehabilitation that markedly improves walking after stroke. Autonomous rehabilitation delivery systems that can safely provide high-efficacy rehabilitation in any setting have the potential to alleviate access-related care gaps and improve long-term outcomes after stroke.

Groundhog Day in the emergency department: A systematic review of 20 years of news coverage in Australia.

This study examined how the Australian news media have portrayed public hospital Emergency Departments (EDs) over the last two decades. A systematic review and media frame analysis, searching Factiva and Australia and New Zealand News Stream for digital and print news articles published between January 2000 and January 2020. Eligibility criteria were (1) discussed EDs in public hospitals; (2) the primary focus of the article was the ED; (3) focused on the Australian context; (4) were published by one of the Australian state-based news outlets (e.g., The Sydney Morning Herald, Herald Sun). A pair of reviewers independently screened 242 articles for inclusion according to the pre-established criteria. Discrepancies were resolved via discussion. 126 articles met the inclusion criteria. Pairs of independent reviewers identified frames in 20% of the articles using an inductive approach to develop a framework for coding the remaining articles. News media rely heavily on reporting problems within and with the ED, while also proposing a cause. Praise for EDs was minimal. Opinions were primarily from government spokespeople, professional associations, and doctors. ED performance was often reported as fact, with no reference to the source of the information. Rhetorical framing devices, such as hyperbole and imagery, were used to emphasise dominant themes. The negative bias inherent in news media reporting of EDs could potentially damage public awareness of ED functioning, with implications for the likelihood of the public's accessing ED services. Like in the film Groundhog Day, news media reporting is stuck in a loop reporting the same narrative over and over again.

Enhancing Neuroplasticity in the Chronic Phase After Stroke: Effects of a Soft Robotic Exosuit on Training Intensity and Brain-Derived Neurotrophic Factor.

Objective: High intensity training may enhance neuroplasticity after stroke; however, gait deficits limit the ability to achieve and sustain high walking training intensities. We hypothesize that soft robotic exosuits can facilitate speed-based gait training at higher intensities and longer durations, resulting in a corresponding increase in circulating brain-derived neurotrophic factor (BDNF). Results: Eleven individuals >6-mo post-stroke completed a two-session, pilot randomized crossover trial (NCT05138016). Maximum training speed (Δ: 0.07 ± 0.03 m/s), duration (Δ: 2.07 ± 0.88 min), and intensity (VO2 peak, Δ: 1.75 ± 0.60 ml-O2/kg/min) significantly increased (p < 0.05) during exosuit-augmented training compared to no-exosuit training. Post-session increases in BDNF (Δ: 5.96 ± 2.27 ng/ml, p = 0.03) were observed only after exosuit-augmented training. Biomechanical changes were not observed after exosuit-augmented training; however, a deterioration in gait propulsion symmetry (%Δ: -5 ± 2 %) and an increase in nonparetic propulsion (Δ: 0.9 ± 0.3 %bw) were observed (p < 0.05) after no-exosuit training. Conclusion: Soft robotic exosuits facilitate faster, longer duration, and higher intensity walking training associated with enhanced neuroplasticity.

Built to last? Barriers and facilitators of healthcare program sustainability: a systematic integrative review.

OBJECTIVE: To identify barriers and facilitators associated with the sustainability of implemented and evaluated improvement programs in healthcare delivery systems. DATA SOURCES AND STUDY SETTING: Six academic databases were searched to identify relevant peer-reviewed journal articles published in English between July 2011 and June 2022. Studies were included if they reported on healthcare program sustainability and explicitly identified barriers to, and facilitators of, sustainability. STUDY DESIGN: A systematic integrative review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement. Study quality was appraised using Hawker's Quality Assessment Tool. DATA COLLECTION/EXTRACTION METHODS: A team of reviewers screened eligible studies against the inclusion criteria and extracted the data independently using a purpose-designed Excel spreadsheet. Barriers and facilitators were extracted and mapped to the Integrated Sustainability Framework (ISF). Frequency counts of reported barriers/facilitators were performed across the included studies. RESULTS: Of the 124 studies included in this review, almost half utilised qualitative designs (n = 52; 41.9%) and roughly one third were conducted in the USA (n = 43; 34.7%). Few studies (n = 29; 23.4%) reported on program sustainability beyond 5 years of program implementation and only 16 of them (55.2%) defined sustainability. Factors related to the ISF categories of inner setting (n = 99; 79.8%), process (n = 99; 79.8%) and intervention characteristics (n = 72; 58.1%) were most frequently reported. Leadership/support (n = 61; 49.2%), training/support/supervision (n = 54; 43.5%) and staffing/turnover (n = 50; 40.3%) were commonly identified barriers or facilitators of sustainability across included studies. Forty-six (37.1%) studies reported on the outer setting category: funding (n = 26; 56.5%), external leadership by stakeholders (n = 16; 34.8%), and socio-political context (n = 14; 30.4%). Eight studies (6.5%) reported on discontinued programs, with factors including funding and resourcing, poor fit, limited planning, and intervention complexity contributing to discontinuation. CONCLUSIONS: This review highlights the importance of taking into consideration the inner setting, processes, intervention characteristics and outer setting factors when sustaining healthcare programs, and the need for long-term program evaluations. There is a need to apply consistent definitions and implementation frameworks across studies to strengthen evidence in this area. TRIAL REGISTRATION: https://bmjopen.bmj.com/content/7/11/e018568 .

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.

Evaluation of RuralkidsGPS; A Novel Integrated Paediatric Care Coordination Model of Care in Rural Australia - a Mixed-Methods Study Protocol.

Introduction: The Kids Guided Personalised Service (KidsGPS) is an integrated model of care coordination for children and young people (CYP) living with medical complexity. After successful implementation in an urban setting, the model of care will be rolled-out at scale to four rural regions in New South Wales, Australia to establish RuralKidsGPS. This paper describes the approach and methods for the outcome and implementation evaluation of RuralKidsGPS. Description: The evaluation aims to assess health, economic and implementation outcomes and processes whilst identifying barriers and enablers to inform future rollouts. Measures of health service utilisation (primary outcome), child health related quality of life and parent/carer experiences will be assessed. The implementation evaluation will occur alongside the outcomes evaluation and is underpinned by the Consolidated Framework for Implementation Research and informed by validated quantitative measures and qualitative interviews with patients, families, healthcare providers and service managers. An economic analysis will determine incremental cost effectiveness ratios for the new model of care using health service utilisation data. Conclusion: RuralKidsGPS, if effective, has the potential to improve equity of access to integrated care for CYP and their families and this protocol may inform other evaluations of similar models of care delivered at scale.