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.

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.

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.

Determinants of women's agency in accessing and utilising reproductive healthcare services; a systematic review.

Women's agency is vital to access and use reproductive healthcare services, particularly in contexts where patriarchal beliefs and cultural norms limit women's desire to act on their goals or affect their access to essential resources. However, less is known about what resources enable women to exercise agency to access these services. A comprehensive systematic review was conducted to summarise existing evidence on the determinants of women's agency in accessing and using reproductive healthcare services. Various determinants were identified, including individual characteristics; household structure; reproductive health-related determinants; social relations; and economic factors. These determinants of women's agency in accessing reproductive healthcare services were strongly associated with social norms and cultural beliefs. Several gaps in the literature included inconsistent definitions and measurement of women's agency; lack of considering cultural sensitivities and socially acceptable practices in the conceptualisation and measurement of women's agency; a narrow focus on services related predominantly to pregnancy and birth, with other aspects of services including sexual health and safe abortion being largely unreported. The literature focused on developing countries in Africa and Asia, leaving a significant gap in knowledge about women's agency to access services in other geographical areas or among immigrant or refugee populations living in developed countries.

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.

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.

The Patient Activation Measure (PAM) and the pandemic: Predictors of patient activation among Australian health consumers during the COVID-19 pandemic.

BACKGROUND: Preventative healthcare is crucial for improving individual patient outcomes and is integral to sustainable health systems. The effectiveness of prevention programs is enhanced by activated populations who are capable of managing their own health and are proactive to keep themselves well. However, little is known about the level of activation among people drawn from general populations. We used the Patient Activation Measure (PAM) to address this knowledge gap. METHODS: A representative, population-based survey of Australian adults was conducted in October 2021 during the Delta strain outbreak of the COVID-19 pandemic. Comprehensive demographic information was collected, and the participants completed the Kessler-6 psychological distress scale (K6) and PAM. Multinomial and binomial logistic regression analyses were performed to determine the effect of demographic factors on PAM scores, which are categorised into four levels: 1-participants disengaged with their health; 2-becoming aware of how to manage their health; 3-acting on their health; and 4-engaging with preventative healthcare and advocating for themselves. RESULTS: Of 5100 participants, 7.8% scored at PAM level 1; 13.7% level 2, 45.3% level 3, and 33.2% level 4. The mean score was 66.1, corresponding to PAM level 3. More than half of the participants (59.2%) reported having one or more chronic conditions. Respondents aged 18 to 24 years old were twice as likely to score PAM level 1 compared with people aged 25-44 (p < .001) or people aged over 65 years (p < .05). Speaking a language other than English at home was significantly associated with having low PAM (p < .05). Greater psychological distress scores (K6) were significantly predictive of low PAM scores (p < .001). CONCLUSION: Overall, Australian adults showed high levels of patient activation in 2021. People with lower incomes, of younger age, and those experiencing psychological distress were more likely to have low activation. Understanding the level of activation enables targeting sociodemographic groups for extra support to increase the capacity to engage in prevention activities. Conducted during the COVID-19 pandemic, our study provides a baseline for comparison as we move out of the pandemic and associated restrictions and lockdowns. PATIENT OR PUBLIC CONTRIBUTION: The study and survey questions were co-designed with consumer researchers from the Consumers Health Forum of Australia (CHF) as equal partners. Researchers from CHF were involved in the analysis of data and production of all publications using data from the consumer sentiment survey.

Transition models of care for type 1 diabetes: a systematic review.

BACKGROUND: Managing the care regimen for Type 1 Diabetes is challenging for emerging adults, as they take on greater responsibility for self-management. A diverse range of models of care have been implemented to improve safety and quality of care during transition between paediatric and adult services. However, evidence about acceptability and effectiveness of these is limited. Our aim was to synthesise the evidence for transition models and their components, examine the health related and psychosocial outcomes, and to identify determinants associated with the implementation of person-centred models of transition care. METHOD: We searched Medline, CINAHL, EMBASE and Scopus. Peer reviewed empirical studies that focused on T1D models of care published from 2010 to 2021 in English, reporting experimental, qualitative, mixed methods, and observational studies were included. RESULTS: Fourteen studies reported on health and psychosocial outcomes, and engagement with healthcare. Three key models of care emerged: structured transition education programs (6 studies), multidisciplinary team transition support (5 studies) and telehealth/virtual care (3 studies). Compared with usual practice, three of the six structured transition education programs led to improvements in maintenance of glycaemic control, psychological well-being, and engagement with health services. Four MDT transition care models reported improved health outcomes, and improved engagement with health services, however, three studies reported no benefit. Reduced diabetes related stress and increased patient satisfaction were reported by two studies, but three reported no benefit. Telehealth and virtual group appointments improved adherence to self-management and reduced diabetes distress but did not change health outcomes. CONCLUSIONS: Although some health and psychosocial benefits are reported, the results were mixed. No studies reported on T1D transition model implementation outcomes such as acceptability, adoption, and appropriateness among clinicians or managers implementing these models. This gap needs to be addressed to support future adoption of successful models.

Systems resilience in the implementation of a large-scale suicide prevention intervention: a qualitative study using a multilevel theoretical approach.

BACKGROUND: Resilience, the capacity to adapt and respond to challenges and disturbances, is now considered fundamental to understanding how healthcare systems maintain required levels of performance across varying conditions. Limited research has examined healthcare resilience in the context of implementing healthcare improvement programs across multiple system levels, particularly within community-based mental health settings or systems. In this study, we explored resilient characteristics across varying system levels (individual, team, management) during the implementation of a large-scale community-based suicide prevention intervention. METHODS: Semi-structured interviews (n=53) were conducted with coordinating teams from the four intervention regions and the central implementation management team. Data were audio-recorded, transcribed, and imported into NVivo for analysis. A thematic analysis of eight transcripts involving thirteen key personnel was conducted using a deductive approach to identify characteristics of resilience across multiple system levels and an inductive approach to uncover both impediments to, and strategies that supported, resilient performance during the implementation of the suicide prevention intervention. RESULTS: Numerous impediments to resilient performance were identified (e.g., complexity of the intervention, and incompatible goals and priorities between system levels). Consistent with the adopted theoretical framework, indicators of resilient performance relating to anticipation, sensemaking, adaptation and tradeoffs were identified at multiple system levels. At each of the system levels, distinctive strategies were identified that promoted resilience. At the individual and team levels, several key strategies were used by the project coordinators to promote resilience, such as building relationships and networks and carefully prioritising available resources. At the management level, strategies included teambuilding, collaborative learning, building relationships with external stakeholders, monitoring progress and providing feedback. The results also suggested that resilience at one level can shape resilience at other levels in complex ways; most notably we identified that there can be a downside to resilience, with negative consequences including stress and burnout, among individuals enacting resilience. CONCLUSIONS: The importance of considering resilience from a multilevel systems perspective, as well as implications for theory and future research, are discussed.

What factors are considered in hospital funding models? A review of the literature on health services funding in organisation for economic co-operation and development countries.

BACKGROUND: One of the most difficult challenges in healthcare involves equitable allocation of resources. Our review aimed to identify international funding models in Organisation for Economic Co-operation and Development (OECD) countries for government-funded public hospitals and evidence underpinning their efficacy, via review of the peer-reviewed and grey literature. METHODS: Ovid-Medline, Ovid Embase, Scopus, and PubMed were searched for peer-reviewed literature. Advanced Google searches and targeted hand searches of relevant organisational websites identified grey literature. Inclusion criteria were: English language, published between 2011 and 2022, and that the article: (1) focused on healthcare funding; (2) reported on or identified specific factors, indexes, algorithms or formulae associated with healthcare funding; and (3) referred to countries that are members of the OECD, excluding the United States (US). RESULTS: For peer-reviewed literature 1189 abstracts and 35 full-texts were reviewed; six articles met the inclusion criteria. For grey literature, 2996 titles or abstracts and 37 full-texts were reviewed; five articles met the inclusion criteria. Healthcare funding arrangements employed in 15 OECD countries (Australia, Belgium, Canada, Finland, France, Germany, Israel, Italy, the Netherlands, New Zealand, Norway, Spain, Sweden, Switzerland, and the United Kingdom [UK; specifically, England, Scotland, Wales and Northern Ireland]) were identified, but papers reported population-based funding arrangements for specific regions rather than hospital-specific models. CONCLUSIONS: While some models adjusted for deprivation and ethnicity factors, none of the identified documents reported on health systems that adjusted funding allocation for social determinants such as health literacy levels.

The impact of type 1 diabetes mellitus in childhood on academic performance: A matched population-based cohort study.

BACKGROUND AND OBJECTIVE: The impact of type 1 diabetes mellitus (T1D) on academic performance is inconclusive. This study aims to compare scholastic performance and high-school completion in young people hospitalized with T1D compared to matched peers not hospitalized with diabetes. RESEARCH DESIGN: Retrospective case-comparison cohort study. METHOD: A population-level matched case-comparison study of people aged ≤18 hospitalized with T1D during 2005-2018 in New South Wales, Australia using linked health-related and education records. The comparison cohort was matched on age, gender, and residential postcode. Generalized linear mixed modeling examined risk of school performance below the national minimum standard (NMS) and generalized linear regression examined risk of not completing high school for young people hospitalized with T1D compared to peers. Adjusted relative risks (ARR) were calculated. RESULTS: Young females and males hospitalized with T1D did not have a higher risk of not achieving the NMS compared to peers for numeracy (ARR: 1.19; 95%CI 0.77-1.84 and ARR: 0.74; 95%CI 0.46-1.19) or reading (ARR: 0.98; 95%CI 0.63-1.50 and ARR: 0.85; 95%CI 0.58-1.24), respectively. Young T1D hospitalized females had a higher risk of not completing year 11 (ARR: 1.73; 95%CI 1.19-2.53) or 12 (ARR: 1.65; 95%CI 1.17-2.33) compared to peers, while hospitalized T1D males did not. CONCLUSIONS: There was no difference in academic performance in youth hospitalized with T1D compared to peers. Improved glucose control and T1D management may explain the absence of school performance decrements in students with T1D. However, females hospitalized with T1D had a higher risk of not completing high school. Potential associations of this increased risk, with attention to T1D and psycho-social management, should be investigated.

Health-related out-of-pocket expenses for children living with rare diseases - tuberous sclerosis and mitochondrial disorders: A prospective pilot study in Australian families.

AIM: We aimed to describe health-related out-of-pocket (OOP) expenses incurred by Australian families living with children with chronic and complex diseases. METHODS: A prospective pilot study of OOP expenses in families with children with tuberous sclerosis (TS) or mitochondrial disorders (MD) in 2016-2017. An initial survey assessed the family's financial situation, child's health functioning and estimated previous 6 months' and lifetime OOP expenses. Thereafter, families completed a survey each month for 6 months, prospectively tracking OOP expenses. RESULTS: Initial surveys were completed by 13 families with 15 children; median age 7 years (range: 1-12); 5 with MD, 10 with TS. All families reported OOP expenses: 38% paid $2000 per annum, more than double the annual per-capita OOP costs reported for Australia by the Organisation for Economic Co-operation and Development. Eight families estimated $5000-$25 000 in OOP expenses over their child's lifetime and 62% of mothers reduced or stopped work due to caring responsibilities. Eleven families paid annual private health insurance premiums of $2000-$5122, but 72% said this was poor value-for-money. Prospective tracking by eight families (9 children) identified the median OOP expenditure was $863 (range $55-$1398) per family for 6 months. OOP spending was associated with visits to allied health professionals, non-prescription medicines, special foods, supplements and disposable items. Eight families paid for 91 prescription medications over 6 months. CONCLUSION: All families caring for children with TS or MD reported OOP expenses. A larger study is needed to explore the affordability of health care for children living with a broader range of chronic diseases.

Accessible and affordable healthcare? Views of Australians with and without chronic conditions.

BACKGROUND: With 50% of Australians having chronic disease, health consumer views are an important barometer of the 'health' of the healthcare system for system improvement and sustainability. AIMS: To describe the views of Australian health consumers with and without chronic conditions when accessing healthcare. METHODS: A survey of a representative sample of 1024 Australians aged over 18 years, distributed electronically and incorporating standardised questions and questions co-designed with consumers. RESULTS: Respondents were aged 18-88 years (432 males, 592 females) representing all states and territories, and rural and urban locations. General practices (84.6%), pharmacies (62.1%) and public hospitals (32.9%) were the most frequently accessed services. Most care was received through face-to-face consultations; only 16.5% of respondents accessed care via telehealth. The 605 (59.0%) respondents with chronic conditions were less likely to have private health insurance (50.3% vs 57.9%), more likely to skip doses of prescribed medicines (53.6% vs 28.6%), and miss appointments with doctors (15.3% vs 10.1%) or dentists (52.8% vs 40.4%) because of cost. Among 480 respondents without private health insurance, unaffordability (73.5%) or poor value for money (35.3%) were the most common reasons. Most respondents (87.7%) were confident that they would receive high quality and safe care. However, only 57% of people with chronic conditions were confident that they could afford needed healthcare compared with 71.3% without. CONCLUSIONS: Health consumers, especially those with chronic conditions, identified significant cost barriers to access of healthcare. Equitable access to healthcare must be at the centre of health reform.

Changes in public perceptions and experiences of the Australian health-care system: A decade of change.

BACKGROUND: The views and experiences of the Australian public are an important barometer of the health system. This study provides key findings about the changing views held by Australians over time regarding their individual experiences and perceptions of the overall performance of the health system. METHODS: A population-based online survey was conducted in 2018 (N = 1024). Participants were recruited through market research panels. The results were compared with previous Australian population survey data sets from 2008 (N = 1146), 2010 (N = 1201) and 2012 (N = 1200), each of which used different population samples. The survey included questions consistent with previous surveys regarding self-reported health status, and questions about use, opinions and experiences of the health system. RESULTS: Overall, there has been a shift in views from 2008 to 2018, with a higher proportion of respondents now viewing the Australian health-care system more positively (X2 (2, N = 4543) = 96.59, P < .001). In 2018, areas for attention continued to include the following: the need for more doctors, nurses and other health workers (29.0%); lower costs for care or Orion medicines (27.8%); more access to care (13.1%); and enhancements in residential aged care (17.3% rated these services as 'bad' or 'very bad'). CONCLUSIONS: This research suggests that Australians' perceptions of their health-care system have significantly improved over the last decade; however, concerns have emerged over access to medicines, inadequate workforce capacity and the quality of aged care facilities. Our study highlights the value of periodically conducting public sentiment surveys to identify potential emerging health system problems.

Rare diseases research and policy in Australia: On the journey to equitable care.

Almost exactly 10 years after the publication of 'Call for a national plan for rare diseases' in this journal, the Federal Government launched the National Strategic Action Plan for Rare Diseases (the Action Plan) on the 26th of February 2020, in the lead up to Rare Disease Day on the 29th of February - a rare day for rare diseases. The Action Plan is the culmination of effective advocacy by Rare Voices Australia (RVA) and other stakeholders in the rare disease (RD) sector. RVA is the peak body for Australians living with a RD. The organisation works collaboratively with RD organisations, researchers and clinicians. Since the initial call for a RD plan, a number of health-care initiatives and policy changes have gathered apace including expanded antenatal and newborn screening, the increasing application of next generation sequencing and advances in gene and cell therapeutics. The development of new models of care, diagnostic and treatment pathways, and communities of practice have started to ease the considerable burden and inequitable access to care experienced by RD patients and their families. However, much work remains to be done. The Action Plan outlines the actions to bring about the best possible health and well-being outcomes for Australians living with RD. It is centred around three pillars - awareness and education, care and support, research and data - and will be delivered against the principles of person centredness, equity, and sustainable systems and workforce.

Safety and effectiveness of stoss therapy in children with vitamin D deficiency.

AIM: Paediatric vitamin D (25-hydroxyvitamin D (25OHD)) deficiency can lead to nutritional rickets and extra-skeletal complications. Compliance with daily therapy can be difficult, making high-dose, short-term vitamin D (stoss) therapy attractive to correct vitamin D deficiency. We compared the effectiveness and safety of standard versus stoss therapy in treating childhood 25OHD deficiency. METHODS: Children aged 2-16 years with 25OHD <50 nmol/L were randomised to either standard (5000 IU daily for 80 days) or stoss (100 000 IU weekly for 4 weeks) cholecalciferol. Participants underwent an evaluation of effectiveness and safety. The 25OHD level, random spot calcium: creatinine ratio (Ca:Cr) and compliance were measured at 12 weeks. RESULTS: A total of 151 children were enrolled in the study (68 standard and 83 stoss), median age 9 years (inter-quartile range (IQR): 6-12 years). Baseline 25OHD levels were 26 nmol/L (IQR: 19-35 nmol/L) and 32 nmol/L (IQR: 24-39 nmol/L) in the standard and stoss groups, respectively. At 12 weeks, the median 25OHD level was significantly greater in the standard versus stoss group (81 vs. 67 nmol/L; P = 0.005); however, >80% of participants in both groups achieved sufficiency (25OHD > 50 nmol/L) and had normal urinary Ca:Cr, with no significant difference seen between groups. Compliance was similar in the two groups. CONCLUSIONS: Compared to stoss, standard therapy achieved higher 25OHD levels at 12 weeks; however, in both groups, there was a similar proportion of participants who achieved 25OHD sufficiency, with no evidence of toxicity. Unlike other studies, simplifying the treatment regimen did not improve compliance. These results support stoss therapy as an effective and safe alternative therapy for the treatment of paediatric vitamin D deficiency.

Implementation of e-mental health for depression and anxiety: A critical scoping review.

The aim of this review was to scope the growth and development of implementation research of e-mental healthcare programs for anxiety and depression, the research and evaluation tools used, and the specific implementation processes and outcomes examined. A search of four electronic databases (MEDLINE, EMBASE, PsycINFO, and CINAHL) was conducted from January 2000 to January 2019. Of 33 studies identified, most (n = 28) were published in the last five years. Only 10 used an implementation framework to guide implementation or evaluation. Most studies reported on acceptability (n = 28), appropriateness (n = 23), and feasibility (n = 17). Less commonly reported implementation outcomes were fidelity (n = 10) and adoption (n = 7); with penetration (n = 4), sustainability (n = 3), and implementation cost (n = 2) being studied rarely. Of the 21 studies that used surveys to study implementation outcomes, less than half used a previously published survey (n = 9). More rigorous implementation studies, underpinned by strong theory and real-world understanding, are urgently needed.

Does evidence-based medicine training improve doctors' knowledge, practice and patient outcomes? A systematic review of the evidence.

Courses in Evidence-Based Medicine (EBM) for doctors have consistently demonstrated short-term improvements in knowledge. However, there is no strong evidence linking EBM training to changes in clinical practice or patient outcomes. This systematic review investigates whether EBM training leads to sustained improvements in doctors' knowledge and practice behaviors that may also facilitate changes in patient outcomes and experiences. A literature search was undertaken in Ovid Medline, Ovid Embase, The Cochrane Library, ERIC and Scopus. Studies published from 1997 to 2016 that assessed outcomes of EBM educational interventions amongst doctors and used measures of knowledge, skills, attitudes, practice or patient outcomes were included. Fifteen studies were included in the analysis: four randomized controlled trials (RCTs), three non-RCTs, and eight before-after (longitudinal cohort) studies. Heterogeneity among studies prevented meaningful comparisons. Varying degrees of bias due to the use of subjective measures were identified, limiting study validity. Results showed that EBM interventions can improve short-term knowledge and skills, but there is little reliable evidence of changes in long-term knowledge, attitudes, and clinical practice. No study measured improvement in patient outcomes or experiences. EBM training for medical practitioners needs to incorporate measures of behavioral changes while incorporating patient outcomes and experience measures.

A Prospective Study of the Incidence of Juvenile-Onset Recurrent Respiratory Papillomatosis After Implementation of a National HPV Vaccination Program.

Background: Recurrent respiratory papillomatosis is a rare but morbid disease caused by human papillomavirus (HPV) types 6 and 11. Infection is preventable through HPV vaccination. Following an extensive quadrivalent HPV vaccination program (females 12-26 years in 2007-2009) in Australia, we established a method to monitor incidence and demographics of juvenile-onset recurrent respiratory papillomatosis (JORRP) cases. Methods: The Australian Paediatric Surveillance Unit undertakes surveillance of rare pediatric diseases by contacting practitioners monthly. We enrolled pediatric otorhinolaryngologists and offered HPV typing. We report findings for 5 years to end 2016. Results: The average annual incidence rate was 0.07 per 100000. The largest number of cases was reported in the first year, with decreasing annual frequency thereafter. Rates declined from 0.16 per 100000 in 2012 to 0.02 per 100000 in 2016 (P = .034). Among the 15 incident cases (60% male), no mothers were vaccinated prepregnancy, 20% had maternal history of genital warts, and 60% were first born; 13/15 were born vaginally. Genotyped cases were HPV-6 (n = 4) or HPV-11 (n = 3). Conclusion: To our knowledge, this is the first report internationally documenting decline in JORRP incidence in children following a quadrivalent HPV vaccination program.

A qualitative study of health care providers' perceptions and experiences of working together to care for children with medical complexity (CMC).

BACKGROUND: Children with medical complexity (CMC) have a wide range of long term health problems and disabilities that have an adverse impact on their quality of life. They have high levels of family identified health care needs and health care utilisation. There is no Australian literature on the experiences of health care providers working in the Australian tertiary, secondary and primary health care system, whilst managing CMC. This information is essential to inform the design of integrated health care systems for these children. We address this knowledge gap by exploring the perceptions and experiences of health care providers on the provision of health care for CMC aged 0 to 18 years. METHOD: A qualitative research study was undertaken. Stakeholder forums, group and individual in depth interviews were undertaken using a semi-structured interview guide. The stakeholder forums were audio recorded and transcribed verbatim. Field notes of the stakeholder forums, group and individual interviews were taken. Inductive thematic analysis was undertaken to identify key themes. RESULTS: One hundred and three providers took part in the stakeholder forums and interviews across 3 local health districts, a tertiary paediatric hospital network, and primary health care organisations. Providers expressed concern regarding family capacity to negotiate the system, which was impacted by the medical complexity of the children and psychosocial complexity of their families. Lack of health care provider capacity in terms of their skills, time and availability to manage CMC was also a key problem. These issues occurred within a health system that had impaired capacity in terms of fragmentation of care and limited communication among health care providers. CONCLUSION: When designing integrated care models for CMC, it is essential to understand and address the challenges experienced by their health care providers. This requires adequate training of providers, additional resources and time for coordination of care, improved systems of communication among services, with timely access to key information for parents and providers.