Patient and carer transition outcomes and experiences at the Westmead Centre for Adolescent and Young Adult Health, Westmead, Australia: protocol for a longitudinal cohort study.

INTRODUCTION: The Westmead Centre for Adolescent and Young Adult Health is a purpose-built facility supporting integrated care for young patients with a variety of long-term health conditions transitioning from paediatric services at the Children's Hospital at Westmead to adult services at Westmead Hospital, Australia. METHODS AND ANALYSIS: This protocol outlines a prospective, within-subjects, repeated-measures longitudinal cohort study to measure self-reported experiences and outcomes of patients (12-25 years) and carers accessing transition care at the Centre for Adolescent and Young Adult Health. Longitudinal self-report data will be collected using Research Electronic Data Capture surveys at the date of service entry (recruitment baseline), with follow-ups occurring at 6 months, 12 months, 18 months and after transfer to adult services. Surveys include validated demographic, general health and psychosocial questionnaires. Participant survey responses will be linked to routinely recorded data from hospital medical records. Hospital medical records data will be extracted for the 12 months prior to service entry up to 18 months post service entry. All young people accessing services at the Centre for Adolescent and Young Adult Health that meet inclusion criteria will be invited to join the study with research processes to be embedded into routine practices at the site. We expect a sample of approximately 225 patients with a minimum sample of 65 paired responses required to examine pre-post changes in patient distress. Data analysis will include standard descriptive statistics and paired-sample tests. Regression models and Kaplan-Meier method for time-to-event outcomes will be used to analyse data once sample size and test requirements are satisfied. ETHICS AND DISSEMINATION: The study has ethics approval through the Sydney Children's Hospitals Network Human Research Ethics Committee (2021/ETH11125) and site-specific approvals from the Western Sydney Local Health District (2021/STE03184) and the Sydney Children's Hospitals Network (2039/STE00977). Patients under the age of 18 will require parental/carer consent to participate in the study. Patients over 18 years can provide informed consent for their participation in the research. Dissemination of research will occur through publication of peer-reviewed journal reports and conference presentations using aggregated data that precludes the identification of individuals. Through this work, we hope to develop a digital common that can be shared with other researchers and clinicians wanting to develop a standardised and shared approach to the measurement of patient outcomes and experiences in transition care.

Benefits, implementation and sustainability of innovative paediatric models of care for children with type 1 diabetes: a systematic review.

BACKGROUND AND AIM: The evidence about the acceptability and effectiveness of innovative paediatric models of care for Type 1 diabetes is limited. To address this gap, we synthesised literature on implemented models of care, model components, outcomes, and determinants of implementation and sustainability. METHODS: A systematic review was conducted and reported in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Database searches of Medline, CINAHL, EMBASE and Scopus were conducted. Empirical studies focused on Type 1 diabetes paediatric models of care, published from 2010 to 2022 in English were included. RESULTS: Nineteen extant studies reported on models and their associations with health and psychosocial outcomes, patient engagement with healthcare, and healthcare costs. Thirteen studies described multidisciplinary teamwork, education and capacity building that supported self-care. Four studies involved shared decision making between providers and patients, and two discussed outreach support where technology was an enabler. Fourteen studies reported improvements in health outcomes (e.g. glycaemic control), mostly for models that included multidisciplinary teams, education, and capacity building (11 studies), outreach support or shared care (3 studies). Four studies reported improvements in quality of life, three reported increased satisfaction for patients and carers and, and one reported improved communication. Four of five studies describing shared care and decision-making reported improvements in quality of life, support and motivation. Outreach models reported no negative outcomes, however, accessing some models was limited by technological and cost barriers. Eight studies reported on model sustainability, but only half reported implementation determinants; none reported applying a theoretical framework to guide their research. CONCLUSION: Some health and psychosocial benefits were associated with newer models. To address knowledge gaps about implementation determinants and model sustainability, longitudinal studies are needed to inform future adoption of innovative models of care for children with Type 1 diabetes.

Public Perceptions of the Australian Health System During COVID-19: Findings From a 2021 Survey Compared to Four Previous Surveys.

BACKGROUND: This study examines the perceptions of the Australian public canvassed in 2021 during the COVID-19 pandemic about their health system compared to four previous surveys (2008, 2010, 2012 and 2018). METHODS: In 2021, a nationwide online survey was conducted with a representative sample of Australians (N = 5100) recruited via market research panels. The results were compared to previous nationwide Australian survey samples from 2018 (N = 1024), 2012 (N = 1200), 2010 (N = 1201) and 2008 (N = 1146). The survey included questions consistent with previous polls regarding self-reported health status and overall opinions of, and confidence in, the Australian health system. RESULTS: There was an increase in the proportion of respondents reporting positive perceptions at each survey between 2008 and 2021, with a significantly higher proportion of respondents expressing a more positive view of the Australian healthcare system in 2021 compared to previous years (χ2(8, N = 9645) = 487.63, p < 0.001). In 2021, over two-thirds of respondents (n = 3949/5100, 77.4%) reported that following the COVID-19 pandemic, their confidence in the Australian healthcare system had either remained the same (n = 2433/5100, 47.7%) or increased (n = 1516/5100, 29.7%). Overall, respondents living in regional or remote regions, younger Australians (< 45 years) and women held less positive views in relation to the system. In 2021, the most frequently identified area for urgent improvement was the need for more healthcare workers (n = 1350/3576, 37.8%), an area of concern particularly for Australians residing in regional or remote areas (n = 590/1385, 42.6%). CONCLUSIONS: Irrespective of disruptions to the Australian healthcare system caused by the COVID-19 pandemic, Australians' perceptions of their healthcare system were positive in 2021. However, concerns were raised about inadequate workforce capacity and the cost of healthcare, with differences identified by age groups and geographical location. PATIENT OR PUBLIC CONTRIBUTION: Health consumer representatives from the Consumers Health Forum of Australia contributed to the co-design, deployment, analysis and interpretation of the results of this survey. J.A. and L.W. from the Consumers Health Forum of Australia contributed to the development of the paper.

Implementing absolute cardiovascular disease risk assessment into pathology collection services.

BACKGROUND: Pathology services represent an ideal setting to integrate absolute cardiovascular disease (CVD) risk estimation when patients attend for routine cholesterol testing. This study aimed to explore the process of implementing CVD risk estimation into point-of-care service delivery by pathology staff to inform future implementation and sustainability. METHODS: A new service for CVD risk estimation via a self-directed screening station was implemented into 14 pathology service sites across Tasmania, Australia. Before implementation, observations at pathology services (n = 26) and semi-structured interviews were undertaken with 26 pathology staff (88% female, 77% aged 41-60 years) to identify factors that could impact implementation of the service. The process of implementation was then evaluated using participant observations and clinical trial recruitment data. Transcripts and field notes were analysed thematically according to the Medical Research Council Framework and used to develop a programme logic model to understand how the service could be adapted to be successfully integrated into routine workflow at pathology services. RESULTS: Eight key themes were identified during the pre-implementation phase as important factors that could impact upon integration of CVD risk estimation into pathology services. Themes related to factors within the organisation, including available resources, logistics and workflow, as well as having sufficient time to complete the intervention. Additional factors related to the individual motivations of staff, collaborative leadership and patient characteristics. Success of implementation varied among sites, requiring the trialling of different strategies to support uptake of the service and patient recruitment. CONCLUSIONS: Implementing CVD risk estimation into point-of-care pathology services required an understanding of the core implementation components specific to each context, and for implementation strategies to be targeted to the individual and organisational contexts. The generated programme logic model may be useful in guiding future implementation endeavours within these services and aiding the selection of apt implementation strategies. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04896021, registered 19/05/2021, https://clinicaltrials.gov/study/NCT04896021.

Advancing integrated paediatric care in Australian general practices: Qualitative insights from the SC4C GP-paediatrician model of care.

The Strengthening Care for Children (SC4C) is a general practitioner (GP)-paediatrician integrated model of care that consists of co-consulting sessions and case discussions in the general practice setting, with email and telephone support provided by paediatricians to GPs during weekdays. This model was implemented in 21 general practices in Australia (11 Victoria and 10 New South Wales). Our study aimed to identify the factors moderating the implementation of SC4C from the perspectives of GPs, general practice personnel, paediatricians and families. We conducted a qualitative study as part of the mixed-methods implementation evaluation of the SC4C trial. We collected data through virtual and in-person focus groups at the general practices and phone, virtual and in-person interviews. Data was analysed using an iterative hybrid inductive-deductive thematic analysis. Twenty-one focus groups and thirty-seven interviews were conducted. Overall, participants found SC4C acceptable and suitable for general practices, with GPs willing to learn and expand their paediatric care role. GPs cited improved confidence and knowledge due to the model. Paediatricians reported an enhanced understanding of the general practice context and the strain under which GPs work. GPs and paediatricians reported that this model allowed them to build trust-based relationships with a common goal of improving care for children. Additionally, they felt some aspects, including the lack of remuneration and the work and effort required to deliver the model, need to be considered for the long-term success of the model. Families expressed their satisfaction with the shared knowledge and quality of care jointly delivered by GPs and paediatricians and highlighted that this model of care provides easy access to specialty services without out-of-pocket costs. Future research should focus on finding strategies to ensure the long-term Implementation of this model of care with a particular focus on the individual stressors in general practices.

Is it possible to make 'living' guidelines? An evaluation of the Australian Living Stroke Guidelines.

BACKGROUND: Keeping best practice guidelines up-to-date with rapidly emerging research evidence is challenging. 'Living guidelines' approaches enable continual incorporation of new research, assisting healthcare professionals to apply the latest evidence to their clinical practice. However, information about how living guidelines are developed, maintained and applied is limited. The Stroke Foundation in Australia was one of the first organisations to apply living guideline development methods for their Living Stroke Guidelines (LSGs), presenting a unique opportunity to evaluate the process and impact of this novel approach. METHODS: A mixed-methods study was conducted to understand the experience of LSGs developers and end-users. We used thematic analysis of one-on-one semi-structured interview and online survey data to determine the feasibility, acceptability, and facilitators and barriers of the LSGs. Website analytics data were also reviewed to understand usage. RESULTS: Overall, the living guidelines approach was both feasible and acceptable to developers and users. Facilitators to use included collaboration with multidisciplinary clinicians and stroke survivors or carers. Increased workload for developers, workload unpredictability, and limited information sharing, and interoperability of technological platforms were identified as barriers. Users indicated increased trust in the LSGs (69%), likelihood of following the LSGs (66%), and frequency of access (58%), compared with previous static versions. Web analytics data showed individual access by 16,517 users in 2016 rising to 53,154 users in 2020, a threefold increase. There was also a fourfold increase in unique LSG pageviews from 2016 to 2020. CONCLUSIONS: This study, the first evaluation of living guidelines, demonstrates that this approach to stroke guideline development is feasible and acceptable, that these approaches may add value to developers and users, and may increase guideline use. Future evaluations should be embedded along with guideline implementation to capture data prospectively.

Integrating training in evidence-based medicine and shared decision-making: a qualitative study of junior doctors and consultants.

BACKGROUND: In the past, evidence-based medicine (EBM) and shared decision-making (SDM) have been taught separately in health sciences and medical education. However, recognition is increasing of the importance of EBM training that includes SDM, whereby practitioners incorporate all steps of EBM, including person-centered decision-making using SDM. However, there are few empirical investigations into the benefits of training that integrates EBM and SDM (EBM-SDM) for junior doctors, and their influencing factors. This study aimed to explore how integrated EBM-SDM training can influence junior doctors' attitudes to and practice of EBM and SDM; to identify the barriers and facilitators associated with junior doctors' EBM-SDM learning and practice; and to examine how supervising consultants' attitudes and authority impact on junior doctors' opportunities for EBM-SDM learning and practice. METHODS: We developed and ran a series of EBM-SDM courses for junior doctors within a private healthcare setting with protected time for educational activities. Using an emergent qualitative design, we first conducted pre- and post-course semi-structured interviews with 12 junior doctors and thematically analysed the influence of an EBM-SDM course on their attitudes and practice of both EBM and SDM, and the barriers and facilitators to the integrated learning and practice of EBM and SDM. Based on the responses of junior doctors, we then conducted interviews with ten of their supervising consultants and used a second thematic analysis to understand the influence of consultants on junior doctors' EBM-SDM learning and practice. RESULTS: Junior doctors appreciated EBM-SDM training that involved patient participation. After the training course, they intended to improve their skills in person-centered decision-making including SDM. However, junior doctors identified medical hierarchy, time factors, and lack of prior training as barriers to the learning and practice of EBM-SDM, whilst the private healthcare setting with protected learning time and supportive consultants were considered facilitators. Consultants had mixed attitudes towards EBM and SDM and varied perceptions of the role of junior doctors in either practice, both of which influenced the practice of junior doctors. CONCLUSIONS: These findings suggested that future medical education and research should include training that integrates EBM and SDM that acknowledges the complex environment in which this training must be put into practice, and considers strategies to overcome barriers to the implementation of EBM-SDM learning in practice.

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.

Progress with the Learning Health System 2.0: a rapid review of Learning Health Systems' responses to pandemics and climate change.

BACKGROUND: Pandemics and climate change each challenge health systems through increasing numbers and new types of patients. To adapt to these challenges, leading health systems have embraced a Learning Health System (LHS) approach, aiming to increase the efficiency with which data is translated into actionable knowledge. This rapid review sought to determine how these health systems have used LHS frameworks to both address the challenges posed by the COVID-19 pandemic and climate change, and to prepare for future disturbances, and thus transition towards the LHS2.0. METHODS: Three databases (Embase, Scopus, and PubMed) were searched for peer-reviewed literature published in English in the five years to March 2023. Publications were included if they described a real-world LHS's response to one or more of the following: the COVID-19 pandemic, future pandemics, current climate events, future climate change events. Data were extracted and thematically analyzed using the five dimensions of the Institute of Medicine/Zurynski-Braithwaite's LHS framework: Science and Informatics, Patient-Clinician Partnerships, Continuous Learning Culture, Incentives, and Structure and Governance. RESULTS: The search yielded 182 unique publications, four of which reported on LHSs and climate change. Backward citation tracking yielded 13 additional pandemic-related publications. None of the climate change-related papers met the inclusion criteria. Thirty-two publications were included after full-text review. Most were case studies (n = 12, 38%), narrative descriptions (n = 9, 28%) or empirical studies (n = 9, 28%). Science and Informatics (n = 31, 97%), Continuous Learning Culture (n = 26, 81%), Structure and Governance (n = 23, 72%) were the most frequently discussed LHS dimensions. Incentives (n = 21, 66%) and Patient-Clinician Partnerships (n = 18, 56%) received less attention. Twenty-nine papers (91%) discussed benefits or opportunities created by pandemics to furthering the development of an LHS, compared to 22 papers (69%) that discussed challenges. CONCLUSIONS: An LHS 2.0 approach appears well-suited to responding to the rapidly changing and uncertain conditions of a pandemic, and, by extension, to preparing health systems for the effects of climate change. LHSs that embrace a continuous learning culture can inform patient care, public policy, and public messaging, and those that wisely use IT systems for decision-making can more readily enact surveillance systems for future pandemics and climate change-related events. TRIAL REGISTRATION: PROSPERO pre-registration: CRD42023408896.

Bolstering health systems to cope with the impacts of climate change events: A review of the evidence on workforce planning, upskilling, and capacity building.

BACKGROUND: As global CO2 emissions continue to rise and the 'era of global boiling' takes hold, the health workforce must cope with the challenge of providing care to increasing numbers of patients affected by climate change-related events (e.g., hurricanes, wildfires, floods). In this review, we describe the impacts of these events on the health workforce, and strategies responding to these challenges. METHODS: This rapid systematic review was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses and a registered protocol (PROSPERO CRD42023433610). Eight databases were searched in May 2022 and again in June 2023. Empirical studies discussing climate change and workforce policy, planning, preparedness, and capacity were included. Inductive thematic analysis of extracted data was conducted. RESULTS: From the 60 included studies, two categories emerged: the impacts of climate events on the health workforce (n = 39), and workforce responses to and preparations for climate events (n = 58). Thirty-seven studies reported on both categories. Four impact themes were identified: absenteeism, psychological impacts, system breakdown, and unsafe working conditions; and six responses and preparations themes: training/skill development, workforce capacity planning, interdisciplinary collaboration, role flexibility, role incentivisation, and psychological support. CONCLUSION: This review provides an overview of some of the deleterious impacts of climate events on the health workforce, as well as potential strategies for the health workforce to prepare or respond to climate events. Future studies should assess the implementation and effectiveness of these strategies to ensure a continuously improving healthcare system, and a well-supported health workforce.

Consumer and provider perceptions of the specialist unit model of care: A qualitative study.

BACKGROUND: Specialist care units cater to targeted cohorts of patients, applying evidence-based practice to people with a specific condition (e.g., dementia) or meeting other specific criteria (e.g., children). This paper aimed to collate perceptions of local consumers and health providers around specialist care units, as a model of care that may be considered for a new local healthcare facility. METHODS: This was a qualitative study using two-hour workshops and interviews to collect data. Participants were consumers and health providers in the planned facility's catchment: 49 suburbs in metropolitan Australia. Consumers and health providers were recruited through advertisements and emails. An initial survey collected demographic details. Consumers and health providers participated in separate two-hour workshops in which a scenario around the specialist unit model was presented and discussion on benefits, barriers and enablers of the model was led by researchers. Detailed notes were taken for analysis. RESULTS: Five consumer workshops (n = 22 participants) and five health provider workshops (n = 42) were conducted. Participants were representative of this culturally diverse region. Factors identified by participants as relevant to the specialist unit model of care included: accessibility; a perceived narrow scope of practice; coordination with other services; resources and infrastructure; and awareness and expectations of the units. Some factors identified as risks or barriers when absent were identified as strengths and enablers when present by both groups of participants. CONCLUSIONS: Positive views of the model centred on the higher perceived quality of care received in the units. Negative views centred on a perceived narrow scope of care and lack of flexibility. Consumers hinted, and providers stated explicitly, that the model needed to be complemented by an integrated model of care model to enable continuity of care and easy transfer of patients into and out of the specialist unit.