Erdosteine in children and adults with bronchiectasis (BETTER trial): study protocol for a multicentre, double-blind, randomised controlled trial.

INTRODUCTION: Bronchiectasis is a worldwide chronic lung disorder where exacerbations are common. It affects people of all ages, but especially Indigenous populations in high-income nations. Despite being a major contributor to chronic lung disease, there are no licensed therapies for bronchiectasis and there remain relatively few randomised controlled trials (RCTs) conducted in children and adults. Our RCT will address some of these unmet needs by evaluating whether the novel mucoactive agent, erdosteine, has a therapeutic role in children and adults with bronchiectasis.Our primary aim is to determine in children and adults aged 2-49 years with bronchiectasis whether regular erdosteine over a 12-month period reduces acute respiratory exacerbations compared with placebo. Our primary hypothesis is that people with bronchiectasis who regularly use erdosteine will have fewer exacerbations than those receiving placebo.Our secondary aims are to determine the effect of the trial medications on quality of life (QoL) and other clinical outcomes (exacerbation duration, time-to-next exacerbation, hospitalisations, lung function, adverse events). We will also assess the cost-effectiveness of the intervention. METHODS AND ANALYSIS: We are undertaking an international multicentre, double-blind, placebo-RCT to evaluate whether 12 months of erdosteine is beneficial for children and adults with bronchiectasis. We will recruit 194 children and adults with bronchiectasis to a parallel, superiority RCT at eight sites across Australia, Malaysia and Philippines. Our primary endpoint is the rate of exacerbations over 12 months. Our main secondary outcomes are QoL, exacerbation duration, time-to-next exacerbation, hospitalisations and lung function. ETHICS AND DISSEMINATION: The Human Research Ethics Committees (HREC) of Children's Health Queensland (for all Australian sites), University of Malaya Medical Centre (Malaysia) and St. Luke's Medical Centre (Philippines) approved the study. We will publish the results and share the outcomes with the academic and medical community, funding and relevant patient organisations. TRIAL REGISTRATION NUMBER: ACTRN12621000315819.

Barriers and co-designed strategies for the implementation of negative pressure wound therapy in acute pediatric burn care in Australia: A mixed method study.

PURPOSE: Pediatric burn injuries are a global clinical issue causing significant morbidity. Early adjunctive negative pressure wound therapy improves re-epithelialization rates in children with burns, yet adoption in acute burn care is inconsistent. This investigation aimed to determine barriers to the implementation of adjunctive negative pressure wound therapy for the acute management of pediatric burns and co-design targeted implementation strategies. METHODS: A sequential mixed methods design was used explore barriers to adjunctive negative pressure wound therapy implementation in acute pediatric burn care. An online questionnaire was disseminated to healthcare professionals within four major Australian pediatric hospitals, each with a dedicated burns service. Barriers were coded according to the Consolidated Framework for Implementation Research (CFIR). Semi-structured interviews with senior clinicians tailored implementation strategies to local contexts. A stakeholder consensus meeting consolidated implementation strategies and local processes. RESULTS: Sixty-three healthcare professionals participated in the questionnaire, and semi-structured interviews involved nine senior burn clinicians. We identified eight implementation barriers across all five CFIR domains then co-designed targeted strategies to address identified barriers. Barriers included lack of available resources, limited access to knowledge and information, individual stage of change, patient needs and resources, limited knowledge and beliefs about the intervention, lack of external policies, intervention complexity, and poor implementation planning. CONCLUSION: Multiple contextual factors affect negative pressure wound therapy uptake in acute pediatric burn settings. Results will inform a multi-state stepped-wedge cluster randomized controlled trial. Additional resources, education, training, updated policies, and guidelines are required for successful implementation. It is anticipated that adjunctive negative pressure wound therapy, in conjunction with tailored implementation strategies, will enhance adoption and sustainability. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry: ACTRN12622000166774. Registered 1 February 2022.

Recruitment and baseline characteristics of young adults at risk of early-onset knee osteoarthritis after ACL reconstruction in the SUPER-Knee trial.

Objectives: The study aims to (1) report the process of recruiting young adults into a secondary knee osteoarthritis prevention randomised controlled trial (RCT) after anterior cruciate ligament reconstruction (ACLR); (2) determine the number of individuals needed to be screened to include one participant (NNS) and (3) report baseline characteristics of randomised participants. Methods: The SUpervised exercise-therapy and Patient Education Rehabilitation (SUPER)-Knee RCT compares SUPER and minimal intervention for young adults (aged 18-40 years) with ongoing symptoms (ie, mean score of <80/100 from four Knee injury and Osteoarthritis Outcome Score subscales (KOOS4)) 9-36 months post-ACLR. The NNS was calculated as the number of prospective participants screened to enrol one person. At baseline, participants provided medical history, completed questionnaires (demographic, injury/surgery, rehabilitation characteristics) and underwent physical examination. Results: 1044 individuals were screened to identify 567 eligible people, from which 184 participants (63% male) enrolled. The sample of enrolled participants was multicultural (29% born outside Australia; 2% Indigenous Australians). The NNS was 5.7. For randomised participants, mean±SD age was 30±6 years. The mean body mass index was 27.3±5.2 kg/m2, with overweight (43%) and obesity (21%) common. Participants were, on average, 2.3 years post-ACLR. Over half completed <8 months of postoperative rehabilitation, with 56% having concurrent injury/surgery to meniscus and/or cartilage. The most affected KOOS (0=worst, 100=best) subscale was quality of life (mean 43.7±19.1). Conclusion: Young adults post-ACLR were willing to participate in a secondary osteoarthritis prevention trial. Sample size calculations should be multiplied by at least 5.7 to provide an estimate of the NNS. The SUPER-Knee cohort is ideally positioned to monitor and intervene in the early development and trajectory of osteoarthritis. Trial registration number: ACTRN12620001164987.

Consumer Preferences for a Healthcare Appointment Reminder in Australia: A Discrete Choice Experiment.

BACKGROUND: It is essential to consider the evidence of consumer preferences and their specific needs when determining which strategies to use to improve patient attendance at scheduled healthcare appointments. OBJECTIVES: This study aimed to identify key attributes and elicit healthcare consumer preferences for a healthcare appointment reminder system. METHODS: A discrete choice experiment was conducted in a general Australian population sample. The respondents were asked to choose between three options: their preferred reminder (A or B) or a 'neither' option. Attributes were developed through a literature review and an expert panel discussion. Reminder options were defined by four attributes: modality, timing, content and interactivity. Multinomial logit and mixed multinomial logit models were estimated to approximate individual preferences for these attributes. A scenario analysis was performed to estimate the likelihood of choosing different reminder systems. RESULTS: Respondents (n = 361) indicated a significant preference for an appointment reminder to be delivered via a text message (ß = 2.42, p < 0.001) less than 3 days before the appointment (ß = 0.99, p < 0.001), with basic details including the appointment cost (ß = 0.13, p < 0.10), and where there is the ability to cancel or modify the appointment (ß = 1.36, p < 0.001). A scenario analysis showed that the likelihood of choosing an appointment reminder system with these characteristics would be 97%. CONCLUSIONS: Our findings provide evidence on how healthcare consumers trade-off between different characteristics of reminder systems, which may be valuable to inform current or future systems. Future studies may focus on exploring the effectiveness of using patient-preferred reminders alongside other mitigation strategies used by providers.

Multicomponent processes to identify and prioritise low-value care in hospital settings: a scoping review.

OBJECTIVES: This scoping review mapped and synthesised original research that identified low-value care in hospital settings as part of multicomponent processes. DESIGN: Scoping review. DATA SOURCES: Electronic databases (EMBASE, PubMed, CINAHL, PsycINFO and Cochrane CENTRAL) and grey literature were last searched 11 July and 3 June 2022, respectively, with no language or date restrictions. ELIGIBILITY CRITERIA: We included original research targeting the identification and prioritisation of low-value care as part of a multicomponent process in hospital settings. DATA EXTRACTION AND SYNTHESIS: Screening was conducted in duplicate. Data were extracted by one of six authors and checked by another author. A framework synthesis was conducted using seven areas of focus for the review and an overuse framework. RESULTS: Twenty-seven records were included (21 original studies, 4 abstracts and 2 reviews), originating from high-income countries. Benefit or value (11 records), risk or harm (10 records) were common concepts referred to in records that explicitly defined low-value care (25 records). Evidence of contextualisation including barriers and enablers of low-value care identification processes were identified (25 records). Common components of these processes included initial consensus, consultation, ranking exercise or list development (16 records), and reviews of evidence (16 records). Two records involved engagement of patients and three evaluated the outcomes of multicomponent processes. Five records referenced a theory, model or framework. CONCLUSIONS: Gaps identified included applying systematic efforts to contextualise the identification of low-value care, involving people with lived experience of hospital care and initiatives in resource poor contexts. Insights were obtained regarding the theories, models and frameworks used to guide initiatives and ways in which the concept 'low-value care' had been used and reported. A priority for further research is evaluating the effect of initiatives that identify low-value care using contextualisation as part of multicomponent processes.

Implementation outcomes of a digital, trauma-informed care, educational intervention targeting health professionals in a paediatric burns setting: A mixed methods process evaluation.

Trauma-informed care practices are associated with a culture of safety following traumatic experiences, including medical trauma. An interactive, web-based training package ('Responsive CARE') was developed for voluntary uptake by paediatric burns health professionals to increase staff knowledge about trauma-informed practice. This paper reports on a mixed methods process evaluation conducted alongside a preliminary effectiveness study of 'Responsive CARE'. The process evaluation was conducted using The Consolidated Framework for Implementation Research (CFIR) and a logic model, to examine feasibility of both the intervention and implementation strategy. Health practitioners (including senior managers) delivering care to children and caregivers attending an outpatient burns service were eligible to enrol in 'Responsive CARE'. Qualitative interview data and quantitative metadata were used to evaluate the implementation outcomes (adoption, acceptability, fidelity, feasibility and preliminary effectiveness). Children and caregivers attending an outpatient service for change of burn wound dressing or burn scar management during the 3-month control or 3-month intervention period were eligible to enrol in the effectiveness study. The impact on child pain and distress, as well as cost, was investigated using a pretest-posttest design. Thirteen (from anticipated 50 enrolled) health professionals (all female) with mean 10 years (SD=11) of experience with paediatric burns hospital-based outpatient care completed an average of 65% (range 36% to 88%) of available content. Twenty-five semi-structured interviews were completed with health practitioners (21 female) and with 14 caregivers (11 female). Four themes were identified as influencing feasibility and acceptability of the intervention: 1) Keeping a trauma-informed lens; 2) Ways of incorporating trauma-informed care; 3) Working within system constraints; and 4) Being trauma-informed. Preliminary effectiveness data included 177 participants (median age 2 years, and median total body surface area burn 1%). Causal assumptions within the logic model were unable to be fully tested, secondary to lower-than-expected adoption and fidelity. We found no significant difference for pain, distress and per-patient hospital care costs between groups (pre- and post-intervention). Future implementation strategies should include organizational support to keep a trauma-informed lens and to incorporate trauma-informed principles within a medical model of care. Despite efforts to co-design a staff education intervention and implementation approach focused on stakeholder engagement, adaptations are indicated to both the intervention and implementation strategies to promote uptake highlighting the complexity of changing clinician behaviours.

Rasch validation of the short form (8 item) PC-QoL questionnaire and applicability of use as a health state classification system for a new preference-based measure.

BACKGROUND: The parent-proxy paediatric chronic cough quality of life questionnaire (PC-QoL) is a commonly used measure of spillover quality of life in parents of children with chronic cough. To date, spillover health utility in these parents is not routinely estimated largely due to the lack of a suitable instrument. Their perspective is not included in economic evaluations of interventions for their children. We explored developing a health state classification system based on the PC-QoL for measuring health utility spill over in this population. METHODS: This study included PC-QoL 8-item responses of 653 parents participating in a prospective cohort study about paediatric chronic cough. Exploratory factor analysis (EFA) and Rasch analysis were used to examine dimensionality and select potential items and level structure. RESULTS: EFA indicated that the PC-QoL had one underlying domain. Rasch analysis indicated threshold disordering in all items which improved when items were collapsed from seven to four levels. Two demonstrated differential item functioning (DIF) by diagnosis or ethnicity and were excluded from the final scale. This scale satisfied Rasch assumptions of local independence and unidimensionality and demonstrated acceptable fit to the Rasch model. It was presented to and modified by an expert panel and a consumer panel. The resulting classification system had six items, each with four levels. DISCUSSION: The PC-QoL can conform to a Rasch model with minor modifications. It may be a good basis for the classification system of a child cough-specific PBM. A valuation study is required to estimate preference weights for each item and to estimate health utility in parents of children with chronic cough.

Prospective validity of a clinical prediction rule for response to non-surgical multidisciplinary management of knee osteoarthritis in tertiary care: a multisite prospective longitudinal study.

OBJECTIVES: We tested a previously developed clinical prediction tool-a nomogram consisting of four patient measures (lower patient-expected benefit, lower patient-reported knee function, greater knee varus angle and severe medial knee radiological degeneration) that were related to poor response to non-surgical management of knee osteoarthritis. This study sought to prospectively evaluate the predictive validity of this nomogram to identify patients most likely to respond poorly to non-surgical management of knee osteoarthritis. DESIGN: Multisite prospective longitudinal study. SETTING: Advanced practice physiotherapist-led multidisciplinary service across six tertiary hospitals. PARTICIPANTS: Participants with knee osteoarthritis deemed appropriate for trial of non-surgical management following an initial assessment from an advanced practice physiotherapist were eligible for inclusion. INTERVENTIONS: Baseline clinical nomogram scores were collected before a trial of individualised non-surgical management commenced. PRIMARY OUTCOME MEASURE: Clinical outcome (Global Rating of Change) was collected 6 months following commencement of non-surgical management and dichotomised to responder (a little better to a very great deal better) or poor responder (almost the same to a very great deal worse). Clinical nomogram accuracy was evaluated from receiver operating characteristics curve analysis and area under the curve, and sensitivity/specificity and positive/negative likelihood ratios were calculated. RESULTS: A total of 242 participants enrolled. Follow-up scores were obtained from 210 participants (87% response rate). The clinical nomogram demonstrated an area under the curve of 0.70 (p<0.001), with greatest combined sensitivity 0.65 and specificity 0.64. The positive likelihood ratio was 1.81 (95% CI 1.32 to 2.36) and negative likelihood ratio 0.55 (95% CI 0.41 to 0.75). CONCLUSIONS: The knee osteoarthritis clinical nomogram prediction tool may have capacity to identify patients at risk of poor response to non-surgical management. Further work is required to determine the implications for service delivery, feasibility and impact of implementing the nomogram in clinical practice.

Prevalence of opioid use in adults with spinal cord injury: A systematic review and meta-analysis.

OBJECTIVE: To determine the prevalence, reported harms and factors associated with opioid use among adults with spinal cord injury (SCI) living in the community. STUDY DESIGN: Systematic review and meta-analysis. METHODS: Comprehensive literature searches were conducted in PubMed (MEDLINE), EMBASE, CINAHL, Web of Science and Scopus for articles published between 2000 and 2023. Risk of bias was assessed using a prevalence-specific tool. Random-effects meta-analyses were conducted to pool prevalence data for any context of opioids. Sensitivity and subgroup analyses were also performed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed, and the study protocol was registered via Prospero (CRD42022350768). RESULTS: Of the 4969 potential studies, 38 were included in the review. Fifty-three percent of studies had a low risk of bias, with a high risk of bias in 5% of studies. The pooled prevalence for the 38 studies included in the meta-analysis (total cohort size of 50,473) across any opioid context was 39% (95% confidence interval [CI], 32-47). High heterogeneity was evident, with a prediction interval twice as wide as the 95% CI (prediction interval, 7-84%). Mean or median opioid dose was unreported in 95% of studies. Opioid dose and factors related to opioids were also rarely explored in the SCI populations. CONCLUSIONS: Results should be interpreted with caution based on the high heterogeneity and imprecise pooled prevalence of opioids. Contextual details including pain, cohort-specific injury characteristics and opioid dosage were inconsistently reported, indicating a clear need for additional studies in a population at greater risk of experiencing opioid-related adverse effects.

Effectiveness of a Regenerative Epithelial Suspension (RES), on the pigmentation of split-thickness skin graft donor sites in children: the dRESsing pilot randomised controlled trial protocol.

BACKGROUND: Paediatric donor site wounds are often complicated by dyspigmentation following a split-thickness skin graft. These easily identifiable scars can potentially never return to normal pigmentation. A Regenerative Epidermal Suspension (RES) has been shown to improve pigmentation in patients with vitiligo, and in adult patients following a burn injury. Very little is known regarding the efficacy of RES for the management of donor site scars in children. METHODS AND ANALYSIS: A pilot randomised controlled trial of 40 children allocated to two groups (RES or no RES) standard dressing applied to donor site wounds will be conducted. All children aged 16 years or younger requiring a split thickness skin graft will be screened for eligibility. The primary outcome is donor site scar pigmentation 12 months after skin grafting. Secondary outcomes include re-epithelialisation time, pain, itch, dressing application ease, treatment satisfaction, scar thickness and health-related quality of life. Commencing 7 days after the skin graft, the dressing will be changed every 3-5 days until the donor site is ≥ 95% re-epithelialised. Data will be collected at each dressing change and 3, 6 and 12 months post skin graft. ETHICS AND DISSEMINATION: Ethics approval was confirmed on 11 February 2019 by the study site Human Research Ethics Committee (HREC) (HREC/18/QCHQ/45807). Study findings will be published in peer-reviewed journals and presented at national and international conferences. This study was prospectively registered on the Australian New Zealand Clinical Trials Registry (available at https://anzctr.org.au/ACTRN12620000227998.aspx). TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry [Available at https://anzctr.org.au/ACTRN12620000227998.aspx].

The impact of infection on length of stay in adult burns: A scoping review.

BACKGROUND: The disruption to the immune system and profound metabolic response to burn injury gives rise to a unique susceptibility to infection. Indeed, infection is one of the most frequently encountered post-burns complications placing significant burden on patients and healthcare system. Advancements in burn care have led to marked improvements in burn-related mortality and morbidity; however, scarce hospital resources hamper adequate burn-related care, and patient length of stay (LOS) in hospital is an important drain on such resources. The aim of this review was to assess and evaluate the existing literature relating to the impact of infections on LOS in hospitalised, adult burn patients. METHODS: Electronic searches were performed in Medline and Embase. Eligible studies were those reporting on LOS and infection in adult burn populations. Articles published before 2000 were excluded to ensure that the analysis was focused on contemporary literature that reflects current, clinical management of burn patients. RESULTS: Nineteen studies (54,397 burn patients) were included in the review. All studies were retrospective, with the majority undertaken in North America (14 studies). The mean age range was 38-67 years and the majority of patients were male. Inhalation injury was recorded in eleven studies. The most common types of infection included pneumonia, blood stream infections (BSI) and burn wound infections. Overall, there was a trend towards a positive association between infection and LOS. CONCLUSION: The results of this scoping review provide an overview of the existing literature on the relationship between infection and LOS in adult burn populations. However, significant gaps remain in knowledge which call for further high-quality research. Standardised definitions for the collection of infection data and the use of burns specific infection control guidelines are also critical to understanding and improving patient outcomes.

Process evaluation of a tailored nudge intervention to promote appropriate care and treatment of older patients at the end-of-life.

BACKGROUND: Non-beneficial treatment affects a considerable proportion of older people in hospital, and some will choose to decline invasive treatments when they are approaching the end of their life. The Intervention for Appropriate Care and Treatment (InterACT) intervention was a 12-month stepped wedge randomised controlled trial with an embedded process evaluation in three hospitals in Brisbane, Australia. The aim was to increase appropriate care and treatment decisions for older people at the end-of-life, through implementing a nudge intervention in the form of a prospective feedback loop. However, the trial results indicated that the expected practice change did not occur. The process evaluation aimed to assess implementation using the Consolidated Framework for Implementation Research, identify barriers and enablers to implementation and provide insights into the lack of effect of the InterACT intervention. METHODS: Qualitative data collection involved 38 semi-structured interviews with participating clinicians, members of the executive advisory groups overseeing the intervention at a site level, clinical auditors, and project leads. Online interviews were conducted at two times: implementation onset and completion. Data were coded to the Consolidated Framework for Implementation Research and deductively analysed. RESULTS: Overall, clinicians felt the premise and clinical reasoning behind InterACT were strong and could improve patient management. However, several prominent barriers affected implementation. These related to the potency of the nudge intervention and its integration into routine clinical practice, clinician beliefs and perceived self-efficacy, and wider contextual factors at the health system level. CONCLUSIONS: An intervention designed to change clinical practice for patients at or near to end-of-life did not have the intended effect. Future interventions targeting this area of care should consider using multi-component strategies that address the identified barriers to implementation and clinician change of practice. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry (ANZCTR), ACTRN12619000675123p (approved 06/05/2019).

Fighting the Same Battles on a New Battleground: Embedding Technologies in a Virtual Care Environment.

The pandemic necessitated the rapid design, development and implementation of technologies to allow remote monitoring of COVID-19 patients at home. This study aimed to explore the environmental barriers and facilitators to the successful development and implementation of virtual care technologies in this fast-paced context. We interviewed eight staff at a virtual hospital in Australia. We found key facilitators to be a learning organizational culture and strong leadership support. Barriers included interoperability issues, legislative constraints and unrealistic clinician expectations. Also, we found that a combination of hot-desking and the lack of single sign on in the virtual care environment, was reported to create additional work for staff. Overall, despite this unique context, our findings are consistent with prior work examining design and implementation of healthcare technologies. The fast pace and high-pressure environment appeared to magnify previously reported barriers, but also cultivate and foster a learning culture.

Preventing hospital falls: feasibility of care workforce redesign to optimise patient falls education.

OBJECTIVE: To examine the feasibility of using allied health assistants to deliver patient falls prevention education within 48 h after hospital admission. DESIGN AND SETTING: Feasibility study with hospital patients randomly allocated to usual care or usual care plus additional patient falls prevention education delivered by supervised allied health assistants using an evidence-based scripted conversation and educational pamphlet. PARTICIPANTS: (i) allied health assistants and (ii) patients admitted to participating hospital wards over a 20-week period. OUTCOMES: (i) feasibility of allied health assistant delivery of patient education; (ii) hospital falls per 1,000 bed days; (iii) injurious falls; (iv) number of falls requiring transfer to an acute medical facility. RESULTS: 541 patients participated (median age 81 years); 270 control group and 271 experimental group. Allied health assistants (n = 12) delivered scripted education sessions to 254 patients in the experimental group, 97% within 24 h after admission. There were 32 falls in the control group and 22 in the experimental group. The falls rate was 8.07 falls per 1,000 bed days in the control group and 5.69 falls per 1,000 bed days for the experimental group (incidence rate ratio = 0.66 (95% CI 0.32, 1.36; P = 0.26)). There were 2.02 injurious falls per 1,000 bed days for the control group and 1.03 for the experimental group. Nine falls (7 control, 2 experimental) required transfer to an acute facility. No adverse events were attributable to the experimental group intervention. CONCLUSIONS: It is feasible and of benefit to supplement usual care with patient education delivered by allied health assistants.

Disability, equity, and measurements of livability: A scoping review.

BACKGROUND: Livability is a concept commonly featured in health research to help shape public policy decisions and improve local place settings. Although widely used, it is a contested concept known for its ambiguity and inconsistency of measurements. Other criticisms include the lack of equity perspectives and the underrepresentation of people with disabilities and inhabitants of non-metropolitan places. OBJECTIVES: This review sought to identify the extent to which people with disabilities and non-metropolitan places are included in measurements of livability and to critically review and summarise i) livability definitions and uses, ii) livability places and populations, and iii) livability measurements. METHODS: The scoping review followed Arksey and O'Malley's methodological framework and the PRISMA extension for scoping reviews. The data extraction used meta-aggregation techniques to evaluate findings. A standardised mixed methods appraisal tool was used, and a novel classification of measurements was created. RESULTS: Seventy-seven articles were included, and 1955 measurements were extracted. The overarching findings were: i) livability is inconsistently defined and assessed by measuring the performance of related and independent domains, ii) the population sample or the studies' participants are often not disclosed, non-metropolitan settings are overlooked, and equity is not generally applied or operationalised in measurements, and iii) there is an extensive lack of measurements considering people with disabilities and diversity within disabilities. CONCLUSIONS: The assumptions of homogeneity in study populations in livability measurement literature overlook inequities experienced by people with disabilities and inhabitants of non-metropolitan settings. This review suggests recommendations for future research to assess livability from perspectives inclusive of human diversity.

Implementing neurodevelopmental follow-up care for children with congenital heart disease: A scoping review with evidence mapping.

AIM: To identify and map evidence describing components of neurodevelopmental follow-up care for children with congenital heart disease (CHD). METHOD: This was a scoping review of studies reporting components of neurodevelopmental follow-up programmes/pathways for children with CHD. Eligible publications were identified through database searches, citation tracking, and expert recommendations. Two independent reviewers screened studies and extracted data. An evidence matrix was developed to visualize common characteristics of care pathways. Qualitative content analysis identified implementation barriers and enablers. RESULTS: The review included 33 studies. Twenty-one described individual care pathways across the USA (n = 14), Canada (n = 4), Australia (n = 2), and France (n = 1). The remainder reported surveys of clinical practice across multiple geographical regions. While heterogeneity in care existed across studies, common attributes included enrolment of children at high-risk of neurodevelopmental delay; centralized clinics in children's hospitals; referral before discharge; periodic follow-up at fixed ages; standardized developmental assessment; and involvement of multidisciplinary teams. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness. Multi-level stakeholder engagement and integration with other services were key drivers of success. INTERPRETATION: Defining components of effective neurodevelopmental follow-up programmes and care pathways, along with enhancing and expanding guideline-based care across regions and into new contexts, should continue to be priorities. WHAT THIS PAPER ADDS: Twenty-two different neurodevelopmental follow-up care pathways/programmes were published, originating from four countries. Twelve additional publications described broad practices for neurodevelopmental follow-up across regions Common attributes across eligibility, service structure, assessment processes, and care providers were noted. Studies reported programme acceptability, uptake, cost, and effectiveness. Implementation barriers included service cost/resourcing, patient burden, and lack of knowledge/awareness.

Stakeholders' preferences for the design and delivery of virtual care services: A systematic review of discrete choice experiments.

This systematic review aimed to synthesise evidence from discrete choice experiments (DCEs) eliciting preferences for virtual models of care, as well as to assess the quality of those DCEs and compare the relative preferences for different stakeholder groups. Articles were included if published between January 2010 and December 2022. Data were synthesised narratively, and attributes were assessed for frequency, significance, and relative importance using a semi-quantitative approach. Overall, 21 studies were included encompassing a wide range of virtual care modalities, with the most common setting being virtual consultations for outpatient management of chronic conditions. A total of 135 attributes were identified and thematically classified into six categories: service delivery, service quality, technical aspects, monetary aspects, health provider characteristics and health consumer characteristics. Attributes related to service delivery were most frequently reported but less highly ranked. Service costs were consistently significant across all studies where they appeared, indicating their importance to the respondents. All studies examining health providers' preferences reported either system performance or professional endorsement attributes to be the most important. Substantial heterogeneity in attribute selection and preference outcomes were observed across studies reporting on health consumers' preferences, suggesting that the consideration of local context is important in the design and delivery of person-centred virtual care services. In general, the experimental design and analysis methods of included studies were clearly reported and justified. An improvement was observed in the quality of DCE design and analysis in recent years, particularly in the attribute development process. Given the continued growth in the use of DCEs within healthcare settings, further research is needed to develop a standardised approach for quantitatively synthesising DCE findings. There is also a need for further research on preferences for virtual care in post-pandemic contexts, where emerging evidence suggests that preferences may differ to those observed in pre-pandemic times.

Clinical decision support systems for chronic obstructive pulmonary disease (COPD) in hospitals: A systematic review.

Objectives: To synthesise the literature on clinical decision support (CDS) systems for chronic obstructive pulmonary disease (COPD). We aimed to (1) describe existing COPD CDS systems that have been designed, developed or are being used in practice, (2) describe the impact of COPD CDS systems on outcomes and (3) identify barriers and facilitators to implementation of COPD CDS systems. Methods: Five databases were searched to identify relevant studies. All studies in English that described clinician-facing COPD CDS systems designed for, or implemented in, hospitals and hospital-in-the-home settings were included. A qualitative narrative synthesis was undertaken, guided by the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance). Results: Twelve studies reporting the use of CDS in hospital (n = 7) and hospital-in-the-home (n = 5) settings were included. Implementation efforts to reach target users were scantly reported, and low-to-medium adoption rates were observed. The reported effectiveness of the CDS systems was mixed. Only one study reported facilitators to the implementation of CDS systems, none reported on barriers to the implementation of CDS systems, and none reported any information on successful strategies to maintain implementation of CDS systems. Conclusion: The use of CDS systems in the management of patients with COPD in hospital-related settings is an important emerging field of research. Evidence suggests that the field has largely focused on systems targeted at physicians, often with incomplete descriptions and limited evaluations. Many opportunities to optimise and evaluate the implementation and use of COPD CDS systems in hospital settings remain, including robust evaluation of their impact on patient, clinician and health service outcomes.

Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review.

In Australia, regulations governing data, including formal legislation and policies promulgated by private and public agencies, are often seen as a barrier to data sharing. This sharing can include between institutions, as well as across jurisdictional borders in a federated jurisdiction such as Australia. In some cases, these regulations place a barrier to sharing data across borders or between institutions without a prerequisite requirement. In other cases, these regulations may be perceived as a justification not to share data. The objective of this review was to analyse published literature from Australia to see what regulations were used to justify not sharing data, along with any other factors that might discourage data sharing. We searched PubMed, Scopus and Web of Science for empirical and policy articles discussing data sharing in Australia. We then filtered these results via abstract and conducted a full text assessment to include 33 articles for analysis. Although there are a few areas of notable regulatory divergence with respect to legislation governing health data, most regulations in Australia are relatively consistent. Further, the absence of uniform ethics approval between sites in different states was frequently cited as a barrier to data sharing.

Geographical challenges and inequity of healthcare access for high-risk paediatric heart disease.

BACKGROUND: Geographical context is an important consideration for health system design to promote equality in access to care for patients with childhood heart disease (CHD), particularly those living in regional, rural, and remote areas. To help inform future policy and practice recommendations, this study aimed to (i) describe the geographic distribution of high-risk CHD patients accessing an Australian state-wide specialist service and (ii) estimate travel time for accessing healthcare via general practitioners (primary), nearest paediatric centre (secondary) and specialist paediatric cardiac centre (tertiary). METHODS: Participants included a cohort of children (0-18 year) who accessed state-wide specialist CHD services over a 3-year period (2019-2021) in Queensland, Australia. Locations for patient residence, general practitioner, closest paediatric centre and tertiary cardiac centre were mapped using geographical information system (GIS) software (ArcGIS Online). Travel distance and times were estimated using a Google Maps Application Programming Interface (API). RESULTS: 1019 patients (median age 3.8 years) had cardiac intervention and were included in the sample. Of this cohort, 30.2% lived outside the heavily urbanised South East Queensland (SEQ) area where the tertiary centre is located. These patients travel substantially further and longer to access tertiary level care (but not secondary or primary level care) compared to those in SEQ. Median distance for patients residing outside SEQ to access tertiary care was 953 km with a travel time of 10 h 43 min. This compares to 5.5 km to the general practitioner and 20.6 km to a paediatric service (8.9 and 54 min respectively). CONCLUSION: This geographical mapping of CHD services has demonstrated a key challenge inherent in providing specialist cardiac care to children in a large state-based healthcare system. A significant proportion of high-risk patients live large distances from tertiary level care. The greater accessibility of primary care services highlights the importance of supporting primary care physicians outside metropolitan areas to acquire or build the ability and capacity to care for children with CHD. Strengthening local primary and secondary services not only has the potential to improve the outcomes of high-risk patients, but also to reduce costs and burden associated with potentially avoidable travel from regional, rural, or remote areas to access specialist CHD services.