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BACKGROUND Digital health literacy has emerged as a critical skillset to navigate the digital age. OBJECTIVE This review sought to broadly summarise the literature on associations between digital health literacy and: (a) socio-demographic characteristics, (b) health resource use, and (c) health outcomes in the general population, patient groups, or parent/caregiver groups. METHODS A rapid review of literature published between January 2016 and May 2022 was conducted through a search of four online databases. Inclusion criteria for articles were: participants were from countries where English was primary language; research was either cross-sectional, longitudinal, prospective or retrospective, and published in English. RESULTS Thirty-six articles met the inclusion criteria. Evidence on the associations between digital health literacy and sociodemographic characteristics varied (27 of 36 included studies; 75%), with higher education (16 of 21 studies that examined the association; 76.2%) and younger age (12 of 21 studies; 57.1%%) tending to predict higher digital health literacy, however, other studies found no associations. No differences between genders were found across the majority of studies. Evidence across ethnic groups was too limited to draw conclusions; some studies showed those from minority groups had higher digital health literacy than Caucasians, while other studies showed no associations. Higher digital health literacy was associated with digital health resource use in the majority of the 20 studies (20/36; 55.6%) that examined this relationship. In addition, higher digital health literacy was also associated with health outcomes across three areas (psychosocial outcomes; chronic disease and health management behaviours; physical outcomes) across the 17 included studies (17/36; 47.2%) that explored these relationships. However, not all studies on the relationship between digital health literacy and health resource use and health outcomes were in the expected direction. CONCLUSIONS The review presents mixed results regarding the relationship between digital health literacy and sociodemographic characteristics, although studies broadly found that increased digital health literacy was positively associated with improved health outcomes and behaviours. Further investigations of digital health literacy on chronic disease outcomes are needed, particularly across diverse groups. Empowering individuals with the skills to critically access and appraise reliable health information on digital platforms and devices is critical, given emerging evidence that suggests those with low digital health literacy seek health information from unreliable sources. Identifying cost-effective strategies to rapidly assess and enhance digital health literacy capacities across community settings thus warrants continued investigation.

Aboriginal Australians have a fundamental human right to opportunities that lead to healthy and flourishing lives. While the impact of trauma on Aboriginal Australians is well-documented, a pervasive deficit narrative that focuses on problems and pathology persists in research and policy discourse. This narrative risks further exacerbating Aboriginal disadvantage, through a focus on ‘fixing what is wrong’ with Aboriginal Australians, and the internalising of these narratives by Aboriginal Australians. While a growing body of research adopts strength-based models, limited research has sought to explore Aboriginal flourishing. This conceptual paper seeks to contribute to a burgeoning paradigm shift in Aboriginal research, seeking to understand what can be learned from Aboriginal people who flourish, how we best determine this, and in what contexts this can be impactful. Within, we argue the case for a new approach to exploring Aboriginal wellbeing that integrates salutogenic, positive psychology concepts with complex systems theory to understand and promote Aboriginal wellbeing and flourishing, While deeper work may be required to establish the parameters of a strength-based, culturally aligned Aboriginal conceptualisation of positive psychology, we suggest the integration of Aboriginal and Western methodologies offer unique and potent means of shifting the dial on seemingly intractable problems.

Background: While co-design offers potential for equitably engaging First Nations Australians in findings solutions to redressing prevailing disparities, appropriate applications of co-design must align with First Nations Australians’ culture, values, and worldviews. To achieve this, robust, culturally grounded, and First Nations-determined principles and practices to guide co-design approaches are required. Aims: This project aimed to develop a set of key principles and best practices for co-design in health with First Nations Australians. Methods: A First Nations Australian co-led team conducted a series of Online Yarning Circles (OYC) and individual Yarns with key stakeholders to guide development of key principles and best practice approaches for co-design with First Nations Australians. The Yarns were informed by the findings of a recently conducted comprehensive review, and a Collaborative Yarning Methodology was used to iteratively develop the principles and practices. Results: A total of 25 stakeholders participated in the Yarns, with 72% identifying as First Nations Australian. Analysis led to a set of six key principles and twenty-seven associated best practices for co-design in health with First Nations Australians. The principles were: First Nations leadership; Culturally grounded approach; Respect; Benefit to community; Inclusive partnerships; and Transparency and evaluation. Conclusions: Together, these principles and practices provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide applications of co-design with First Nations Australians.

Objective: To provide an overview of clinical sequelae and emerging treatment options for hemophagocytic lymphohistiocytosis (HLH). Data Sources: A literature search was conducted using the search terms “hemophagocytic lymphohistiocytosis,” “hemophagocytic syndrome,” “macrophage activation syndrome,” and “treatment” on Ovid and PubMed from January 1, 2017, through September 28, 2022. Study Selection and Data Extraction: Relevant clinical trials, meta-analyses, case reports, review articles, package inserts, and guidelines to identify current and emerging therapeutic options for the management of HLH. Data Synthesis: Genetic disorders and secondary causes may trigger HLH in both children and adults. Notable improvements in the diagnosis of HLH were seen with implementation of the HLH-2004 standard diagnostic criteria; however, timely and accurate identification of HLH remain significant barriers to optimal management. Multiagent immunochemotherapy are the backbone of aggressive therapy for acutely ill patients with HLH. Relevance to Patient Care and Clinical Practice: The global coronavirus 2019 (COVID-19) pandemic and emerging immune effector cell therapies have served to highlight the concerns with immune dysregulation and subsequent HLH precipitation. Without prompt identification and treatment, HLH can be fatal. Historically, the clinician’s armamentarium for managing HLH was sparse, with etoposide-based protocols serving as the standard of care. Relapsed or refractory disease portends a poor prognosis and requires additional treatment options. Second- or subsequent-line options now include hematopoietic stem cell transplantation, emapalumab, alemtuzumab, anakinra, ruxolitinib, and tocilizumab. Conclusions: Improvements in diagnostic methods and novel immunosuppressive treatment strategies, including noncytotoxic immunochemotherapy, have transformed the therapeutic landscape. Unfortunately, many unanswered questions remain. Additional studies are required to optimize dosing, schedules, treatment sequences, and indications for novel treatment options.

Background: Australia’s social, structural, and political context, together with the continuing impact of colonisation, perpetuates health care and outcome disparities for First Nations Australians. A new approach led by First Nations Australians is required to address these disparities. Co-design is emerging as a valued method for First Nations Australian communities to drive change in health policy and practice to better meet their needs and priorities. However, it is critical that co-design processes and outcomes are culturally safe and effective. Aims: This project aimed to identify the current evidence around optimal approaches to co-design in health with First Nations Australians. Methods: First Nations Australian co-led team conducted a comprehensive review to identify peer-reviewed and grey literature reporting the application of co-design in health-related areas by and with First Nations Australians. A First Nations Co-Design Working Group (FNCDWG) was established to guide this work and team.A Collaborative Yarning Methodology (CYM) was used to conduct a thematic analysis of the included literature. Results: After full-text screening, 99 studies were included. Thematic analysis elicited the following six key themes, which included 28 practical sub-themes, relevant to co-design in health with First Nations Australians: First Nations Australians leadership; Culturally grounded approach; Respect; Benefit to First Nations communities; Inclusive partnerships; and Evidence-based decision making. Conclusion: The findings of this review provide a valuable snapshot of the existing evidence to be used as a starting point to guide appropriate and effective applications of co-design in health with First Nations Australians.

As the frequency and duration of grid outages increase, backup power systems are becoming more important for ensuring that critical infrastructure continues to provide essential services. Most facilities rely on diesel generators, which may be ineffective during long outages owing to limited fuel supplies and high generator failure rates. Distributed energy resources such as solar, storage, and combined-heat-and-power systems, coupled with on-site biofuel production, offer an alternative source of on-site generation that can provide both cost savings and resilience (i.e., the ability to respond to catastrophic events with longer-term consequences). A mixed-integer linear program minimizes costs and maximizes resilience at a wastewater treatment plant in Wilmington, North Carolina. We find that the plant can reduce life-cycle energy costs by 3.1% through the installation of a hybrid combined-heat-and-power, photovoltaic, and storage system. When paired with existing diesel generators, this system can sustain full load for seven days while saving $664,000 over 25 years and reducing diesel fuel use by 48% compared with the diesel-only solution. This analysis informed a decision by the Cape Fear Public Utility Authority to allocate funds for the implementation of a combined-heat-and-power system at the wastewater treatment plant in fiscal year 2023. The benefits of deploying hybrid combined-heat-and-power technologies and the utilization of on-site biofuel production extend, on a national scale, to thousands of wastewater treatment facilities and other types of critical infrastructure.

Aboriginal Australians have a fundamental human right to opportunities that lead to healthy and flourishing lives. While the impact of trauma on Aboriginal Australians is well-documented, a pervasive deficit narrative that focuses on problems and pathology persists in research and policy discourse. This narrative risks further exacerbating Aboriginal disadvantage through a focus on ‘fixing what is wrong’ with Aboriginal Australians and the internalising of these narratives by Aboriginal Australians. While a growing body of research adopts strength-based models, limited research has sought to explore Aboriginal flourishing. This conceptual paper seeks to contribute to a burgeoning paradigm shift in Aboriginal research, seeking to understand what can be learned from Aboriginal people who flourish, how we best determine this, and in what contexts this can be impactful. Within, we argue the case for a new approach to exploring Aboriginal wellbeing that integrates salutogenic, positive psychology concepts with complex systems theory to understand and promote Aboriginal wellbeing and flourishing. While deeper work may be required to establish the parameters of a strength-based, culturally aligned Aboriginal conceptualisation of positive psychology, we suggest the integration of Aboriginal and Western methodologies offers a unique and potent means of shifting the dial on seemingly intractable problems.

Background Measurement of patients’ healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Methods A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions Existing tools are likely to miss key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

Objective: To investigate perspectives of primary health care providers (HCPs) on providing cervical screening for Aboriginal and Torres Strait Islander women, who experience a higher burden of cervical cancer than other Australian women. Methods: Semi‐structured interviews with 13 HCPs from four Australian Indigenous primary health care centres (PHCCs). Transcripts were thematically analysed. Results: HCPs discussed the need to approach cervical screening with sensitivity to women's emotional and cultural needs and sustaining relationships built on trust and respect. HCPs reported challenges in promoting screening to Aboriginal and Torres Strait Islander women due to cumbersome systems, competing clinical priorities, workforce capacity limitations and specific challenges associated with implementing the renewed National Cervical Screening Program. Conclusions: In practice, HCPs experience several challenges to delivering cervical screening. Understanding HCPs’ perspectives on their approach to cervical screening delivery, and the systems in which this occurs, can help to ensure that they receive adequate support and resources to deliver cervical screening to Aboriginal and Torres Strait Islander women. Implications for public health: It is important that HCPs adopt a multi‐faceted, person‐centred approach to cervical screening that is responsive to women's needs and that works synchronously with supportive PHCC services and systems and the National Cancer Screening Register.

Decades of research have now amassed regarding parents’ experiences of augmentative and alternative communication service delivery and the data consistently expose a critical tension: while familie...

This poem addresses the nature of qualitative research and the difficulty faced by individuals with disabilities and limited means in accessing healthcare opportunities. Quantitative data related to a medical research study are contrasted with the broader, richer social context of the life of an individual participant. The artist statement provides context and background for the poem, including the inspiration for its composition. Ideas expressed in the poem are discussed relative to the role of medical humanities and the ways information is gathered and viewed in healthcare settings.

This paper empirically derives uncertainty ranges in cost-optimal solar PV and storage sizing by comparing results from the REopt Lite optimization platform from metered data and a set of simulated Department of Energy Commercial Reference Building (CRB) profiles at 65 sites. We find load profile shape alone does not explain a site’s optimal configurations (i.e., PV, Storage, PV and Storage, No System). Still, load profile shape does introduce uncertainty to optimal PV and storage capacities. Across all cases where PV is part of an optimal configuration, we find the average ratio of power capacities derived from metered loads to capacities derived from CRB profiles to be 0.97 (and as high as 1463), where 1 would be a perfect match in system size. For storage, the ratio is 1.6 (and as high as 42). We also assess how, in the absence of complete metered data, a CRB profile can be selected that would be expected to yield the most similar solar PV and storage capacities. From those metrics that can be available from billing data (i.e., peak demand, monthly load totals), we find that uncertainty is most reduced by selecting the CRB’s with an annual peak occurring at the most similar time, or those with the lowest average root mean square error (RMSE) among monthly peak loads. This research can help improve the implementation and interpretation of results derived from simulated load profiles and is an important next step in advancing smart grid solutions.

Microgrids present an effective solution for the coordinated deployment of various distributed energy resources and furthermore provide myriad additional benefits such as resilience, decreased carbon footprint, and reliability to energy consumers and the energy system as a whole. Boosting the resilience of distribution systems is another major benefit of microgrids. This is because they can also serve as a backup power source when the utility grid operations are interrupted due to either high-probability low-impact events like a component failure or low-probability high-impact events - be it a natural disaster or a planned cyberattack. However, the degree to which any particular system can defend, adapt, and restore normal operation depends on various factors including the type and severity of events to which a microgrid is subjected. These factors, in turn, are dependent on the geographical location of the deployed microgrid as well as the cyber risk profile of the site where the microgrid is operating. Therefore, in this work, we attempt to capture this multi-dimensional interplay of various factors in quantifying the ability of the microgrid to be resilient in these varying aspects. This paper, thus, proposes a customized site-specific quantification of the resilience strength for the individual microgrid capability to absorb, restore, and adapt to the changing circumstances for sustaining the critical load when a low-probability high-impact event occurs - termed as - context-aware resilience metric. We also present a case study to illustrate the key elements of our integrated analytical approach., 14 pages, 5 figures, in journal review

Objectives: To develop guidelines, informed by health-care consumer values and preferences, for sarcopenia prevention, assessment and management for use by clinicians and researchers in Australia and New Zealand. Methods: A three-phase Consumer Expert Delphi process was undertaken between July 2020 and August 2021. Consumer experts included adults with lived experience of sarcopenia or health-care utilisation. Phase 1 involved a structured meeting of the Australian and New Zealand Society for Sarcopenia and Frailty Research (ANZSSFR) Sarcopenia Diagnosis and Management Task Force and consumer representatives from which the Phase 2 survey was developed. In Phase 2, consumers from Australia and New Zealand were surveyed online with opinions sought on sarcopenia outcome priorities, consultation preferences and interventions. Findings were confirmed and disseminated in Phase 3. Descriptive statistical analyses were performed. Results: Twenty-four consumers (mean ± standard deviation age 67.5 ± 12.8 years, 18 women) participated in Phase 2. Ten (42%) identified as being interested in sarcopenia, 7 (29%) were health-care consumers and 6 (25%) self-reported having/believing they have sarcopenia. Consumers identified physical performance, living circumstances, morale, quality of life and social connectedness as the most important outcomes related to sarcopenia. Consumers either had no preference (46%) or preferred their doctor (40%) to diagnose sarcopenia and preferred to undergo assessments at least yearly (54%). For prevention and treatment, 46% of consumers preferred resistance exercise, 2–3 times per week (54%). Conclusions: Consumer preferences reported in this study can inform the implementation of sarcopenia guidelines into clinical practice at local, state and national levels across Australia and New Zealand.

BACKGROUND: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. METHODS: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. RESULTS: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. CONCLUSIONS: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges.

Objective: To evaluate the pharmacology, pharmacokinetics, clinical efficacy, safety, dosing, cost, and clinical implications of enfortumab vedotin-ejfv (EV) in the treatment of locally advanced or metastatic urothelial carcinoma (UC). Data Sources: A literature search of PubMed (inception to August 2020) was conducted using the terms enfortumab, vedotin, Padcev, and Nectin. Data were also obtained from package inserts, meeting abstracts, and ongoing studies from ClinicalTrials.gov. Study Selection and Data Extraction: All relevant published articles, package inserts, and meeting abstracts evaluating EV for the treatment of UC were analyzed. Data Synthesis: Antibody-drug conjugates (ADCs) deliver potent cytotoxic agents using highly selective monoclonal antibodies. Targeting the near-universal expression of Nectin-4 on UC cells is a viable therapeutic strategy. In a pivotal phase II trial, EV demonstrated an overall response rate of 44%, and a median duration of response of 7.6 months. Estimated overall survival was 11.7 months with a median estimated progression-free survival of 5.6 months. Results were similar among difficult-to-treat patients, including those with liver metastases. Unique toxicity concerns with EV require careful consideration and monitoring. Relevance to Patient Care and Clinical Practice: EV, a first-in-class anti–Nectin-4 ADC, provides impressive response rates with manageable toxicities, making it a promising treatment option for patients with multiply relapsed or refractory UC. Conclusion: The US Food and Drug Administration–approved EV demonstrates antitumor activity in heavily pretreated patients with UC but harbors important adverse effects and financial concerns. Additional studies are required to identify the optimal sequencing, patient population, and place in therapy for EV.

Objective To evaluate the current literature for tisagenlecleucel in the treatment of relapsed/refractory (r/r) B-cell acute lymphoblastic leukemia (ALL). Data Sources A literature search of PubMed (inception to June 18, 2020) and ClinicalTrials.gov was conducted using the following search terms: CTL019, chimeric antigen receptor, CAR-T, and tisagenlecleucel. Study Selection and Data Extraction All trials evaluating the use of tisagenlecleucel in B-cell ALL were reviewed and considered for inclusion. Data Synthesis Tisagenlecleucel displayed overall remission rates ranging from 69% to 93% in patients who historically respond extremely poorly to salvage therapy. Remissions were durable, with 12-month relapse-free survival (RFS) rates of 55% to 59%. These promising results are tempered by the unique adverse effect profile of chimeric antigen receptor (CAR) T-cell therapy. Potentially life-threatening cytokine release syndrome (CRS) occurred in 77% to 100% of patients, and immune effector cell–associated neurotoxicity syndrome (ICANS) developed in 31% to 45% of patients receiving tisagenlecleucel. Relevance to Patient Care and Clinical Practice The successful utilization of tisagenlecleucel therapy requires meticulous planning, prudent patient selection, multidisciplinary collaboration, and expert training to ensure optimal patient care. The complex interplay of patient- and treatment-related factors creates problematic barriers that must be expertly navigated by the health care team and authorized treatment center. Conclusions As the first US Food and Drug Administration–approved gene therapy, tisagenlecleucel heralds an immunotherapeutic breakthrough for treating pediatric and young adult patients with r/r B-cell ALL. Many questions surrounding patient-specific gene and cellular therapies remain, but their transformative potential in cancer care remains promising.

Objective To evaluate the literature for axicabtagene ciloleucel (axi-cel), a first-in-class chimeric antigen receptor (CAR) T-cell therapy, in the treatment of relapsed/refractory (r/r) large B-cell lymphoma (LBCL). Data Sources We conducted a PubMed (inception to June 22, 2020) and ClinicalTrials.gov search using the following terms: CD19, chimeric antigen receptor, and lymphoma. Study Selection and Data Extraction All retrospective and prospective studies evaluating the use of axi-cel in LBCL were reviewed. Data Synthesis In the pivotal ZUMA-1 trial, axi-cel exhibited unprecedented overall and complete response rates of 83% and 58%, respectively. With a median follow-up of 27.1 months, 39% of patients had ongoing responses. Furthermore, postmarketing retrospective analyses found similar response rates in a more clinically diverse LBCL patient population. Novel CAR T-cell therapy elicits unique and potentially life-threatening toxicities that include cytokine release syndrome (CRS) and immune effector cell–associated neurotoxicity syndrome (ICANS). Studies reported grade ≥3 CRS in 7% to 14% of patients and grade ≥3 ICANS in 31% to 55% of patients. Relevance to Patient Care and Clinical Practice Axi-cel was the first US Food and Drug Administration–approved genetically engineered autologous CAR T-cell agent in r/r LBCL, representing an important milestone and paradigm shift in cancer treatment. Adoptive T-cell immunotherapy is a breakthrough treatment modality requiring careful patient selection, multidisciplinary collaboration, comprehensive patient counseling, and expert training to ensure optimal treatment. Conclusions The initial and ongoing results with axi-cel are encouraging, but long-term safety and efficacy data are lacking. Additional studies are required to identify axi-cel’s ideal place in LBCL therapy.

Objective: Quantify change in wellbeing and health-related quality-of-life (HRQoL) in Aboriginal and Torres Strait Islander adults pre and post Australia's initial COVID-19 lockdown. Methods: Aboriginal and Torres Strait Islander adults completed an online survey at Time 1 (October–November 2019; before the initial Australian COVID-19 outbreak) and Time 2 (August–September 2020; after the first Australian lockdown). We assessed wellbeing using a visual analogue scale (VAS) and HRQoL using the Assessment of Quality of Life (AQoL-4D) instrument. Participants who completed both surveys (n=42) were included to quantify change in outcomes over time and by comorbidity and demographic factors. Results: Mean reduction in wellbeing over time was 6.4 points (95%CI _14.2 to 1.4) and was associated with age (18–54yo), financial instability and mental health comorbidity. Mean reduction in HRQoL over time was 0.06 (95%CI _0.12 to 0.01) and was associated with financial instability, high physical comorbidity level and mental health comorbidity. Conclusions: Aboriginal and Torres Strait Islanders aged 18–54yo, who were financially unstable or had elevated comorbidity during COVID lockdowns experienced greater reductions in wellbeing and HRQoL. Implications for public health: As the COVID-19 pandemic continues in Australia, both urgent and forward planning is needed, especially for the priority groups identified.

Objective To identify sociodemographic factors and health conditions associated with self-rated wellbeing for Aboriginal and Torres Strait Islander adults. Participants were recruited via investigator networks and an online panel provider with an established nationwide panel of Aboriginal and Torres Strait Islander adults. Those interested were invited to complete a survey that included an assessment of wellbeing using a visual analogue scale. Data was collected from October–November 2019 and August–September 2020. Exploratory analyses were conducted to ascertain factors associated with self-rated wellbeing for Aboriginal and Torres Strait Islander adults. Results Having more than enough money to last until next pay day, full-time employment, completion of grade 12, having a partner, and living with others were significantly associated with higher wellbeing among Aboriginal and Torres Strait Islander adults. A self-reported history of depression, anxiety, other mental health conditions, heart disease, or disability were associated with lower self-rated wellbeing scores. Our findings indicate a need for further investigation among these socioeconomic and patient groups to identify how to improve and support the wellbeing of Aboriginal and Torres Strait Islander adults.

Indigenous children and young people (hereafter youth) across CANZUS nations embody a rich diversity of cultures and traditions. Despite the immense challenges facing these youth, many harness cultural and personal strengths to protect and promote their wellbeing. To support this for all youth, it is critical to understand what contributes to their wellbeing. This review aims to identify components contributing to wellbeing for Indigenous youth in CANZUS nations. Five databases were searched from inception to August 2022. Papers were eligible if they: focused on Indigenous youth in CANZUS nations; included views of youth or proxies; and focused on at least one aspect of wellbeing. We identified 105 articles for inclusion (Canada n = 42, Australia n = 27, Aotearoa New Zealand n = 8, USA n = 28) and our analysis revealed a range of thematic areas within each nation that impact wellbeing for Indigenous youth. Findings highlight the unique challenges facing Indigenous youth, as well as their immense capacity to harness cultural and personal strengths to navigate into an uncertain future. The commonalities of Indigenous youth wellbeing across these nations provide valuable insights into how information and approaches can be shared across borders to the benefit of all Indigenous youth and future generations.

Objective: To evaluate the safety and efficacy of selumetinib, a novel MEK inhibitor, for the treatment of plexiform neurofibromas (PN) in patients with neurofibromatosis type 1 (NF1). Data Sources: An English-based literature search of PubMed, EMBASE, and ClinicalTrials.gov was conducted using the terms selumetinib AND neurofibromatosis from inception to August 1, 2021. Study Selection and Data Extraction: Relevant prescribing information, abstracts, and articles identified through the search were considered for inclusion in this review. Data Synthesis: The open-label, multicenter, single-arm, phase II SPRINT trial demonstrated clinically significant improvements in PN-related complications. Of 50 symptomatic patients, 68% experienced a partial response, with a median change in tumor volume of −27.9% from baseline. Estimated progression-free survival at 3 years was 84%. Additionally, clinically meaningful improvements were seen on patient- and parent-reported assessments evaluating pain, range of motion, disfigurement, and quality of life. Overall, the adverse effect profile for selumetinib appears mild and manageable. Relevance to Patient Care and Clinical Practice: Selumetinib is the first FDA-approved treatment for inoperable PN in patients with NF1, demonstrating that MEK inhibition is a promising therapeutic strategy. Studies are ongoing to assess the effect of selumetinib on other NF1-associated tumor types and to determine the optimal dosing schedule and treatment duration. Cost and treatment burden must be considered when selecting selumetinib therapy. Conclusion: Selumetinib exhibits impressive antitumor activity and sustained clinical benefit in patients lacking other viable treatment options. Further studies are warranted to determine the optimal age of initiation, treatment duration, and overall cost-effectiveness of selumetinib.

Objective: To identify and assess the current literature surrounding the safety, efficacy, and practical considerations of brexucabtagene autoleucel (brexu-cel) for the treatment of relapsed or refractory (r/r) mantle cell lymphoma (MCL). Data Sources: An English-based literature search was conducted using the terms “ brexucabtagene autoleucel” AND “ mantle cell lymphoma” OR “ KTE-X19”in PubMed (inception through May 1, 2021), EMBASE (inception through May 1, 2021), and ClinicalTrials.gov. Study Selection and Data Extraction: All studies evaluating the use of brexu-cel in MCL were considered for inclusion. Data Synthesis: In the pivotal ZUMA-2 trial, brexu-cel demonstrated objective response and complete response rates of 85% and 59%, respectively. These results were consistent among high-risk subgroups. Noteworthy treatment-related adverse effects included grade ≥3 cytopenias (94%), immune effector cell–associated neurotoxicity syndrome (31%), and cytokine release syndrome (15%). Brexu-cel elicited a toxicity profile similar to that of other novel chimeric antigen receptor (CAR) T-cell products, with no new safety signals. Relevance to Patient Care and Clinical Practice: There are currently no head-to-head clinical trials evaluating brexu-cel against other approved subsequent-line options in r/r MCL. In a relatively small phase II trial, brexu-cel demonstrated impressive response rates in heavily pretreated patients, with few viable alternatives. Long-term safety and efficacy outcomes with brexu-cel are unknown. The prevention, identification, and management of unique CAR T-cell toxicities requires expert care from a well-trained interdisciplinary team. Conclusion: Brexu-cel has emerged as a viable treatment option in MCL. Additional studies are required to determine the optimal sequencing and place in therapy for brexu-cel in this highly heterogeneous, pathobiologically distinct, and incurable malignancy.

This study examined a new method for measuring the care experiences of Aboriginal and Torres Strait Islander people with cancer: the Indigenous People’s Experiences of Cancer Care Survey (IPECCS). The study assessed IPECCS’s: 1) performance; 2) ability to elicit information useful for service improvements; and 3) implementation potential. Three participant groups were recruited from five Australian cancer treatment sites: 1) Aboriginal and Torres Strait Islander people with cancer (+/- support person); 2) interviewers; and 3) health services staff. Trained interviewers administered IPECCS to participants with cancer in audiotaped sessions. Paper forms and transcripts were compared to assess performance, and problems/potential solutions reported by participants with cancer were assessed for actionability. All participant groups completed separate interviews regarding IPECCS. Selected implementation measures were assessed based on interviews and IPECCS administration. Participants (n=31) included 11 Aboriginal people with cancer, 7 support people, 4 interviewers, and 9 health staff. Aboriginal people with cancer spoke at length about their cancer care experiences and identified problems and potential solutions that could be acted upon by health services. Although some parts of the IPECCS form were well-completed, recording was inconsistent and inadequate. Aboriginal people with cancer and interviewers predominantly supported the IPECCS process; while most health staff supported the aims, they questioned its feasibility. Capturing domains of patient experience relevant to Aboriginal and Torres Strait Islander people requires a culturally safe, strengths-based approach. The tension between facilitating meaningful patient engagement and maximizing the efficiency of data collection and use must be resolved to realise the benefits of such an approach. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

IntroductionAboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is high among Australian adolescents, there remain gaps in uptake and completion among Aboriginal and Torres Strait Islander adolescents. This study aims to gain a comprehensive understanding of the barriers and facilitators to HPV vaccination uptake and completion among Aboriginal and Torres Strait Islander adolescents in Queensland, Australia.Methods and analysisThe study will be guided by an Indigenist research approach and an ecological model for health promotion. Yarning, a qualitative Indigenous research method, will be conducted in up to 10 schools. Participants will include Year 7 (12/13 years old) Aboriginal and Torres Strait Islander adolescents; parents/caregivers; and local key informants and immunisation programme partners involved in the delivery of school-based HPV immunisation programme. Participants will be recruited through school representatives and investigator networks using purposive and snowball sampling and samples of convenience. Field notes, HPV vaccination clinic observations and sequential diagramming of the HPV vaccination process will be conducted. Thematic analysis of data will be led by Aboriginal and Torres Strait Islander researchers. Synthesised sequential diagrams of the process of HPV vaccination and qualitative themes summarising key findings will be produced.Ethics and disseminationThe Aboriginal Health and Medical Research Council of New South Wales Ethics Committee (1646/20), the Australian National University Human Research Ethics Committee (HREC, 2020/478), the HREC of the Northern Territory Department of Health and Menzies School of Health Research (19-3484) and the Townsville Hospital and Health Service HREC (HREC/QTHS/73789) have approved the study. Dissemination will occur via conferences and peer-reviewed publications. Further dissemination will be determined in partnership with the Aboriginal and Torres Strait Islander Steering Committee, including Youth Representatives and Consultation Network.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities, maintaining the carer’s own health and wellbeing, accessing practical support and information, and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient, accessing Indigenous support services and health workers, and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults. An Aboriginal- and Torres Strait Islander-led research team used an Indigenist research approach to iteratively develop this conceptual model, called the Fabric of Aboriginal and Torres Strait Islander Wellbeing model, which takes inspiration from Aboriginal and Torres Strait Islander weaving traditions whereby individual strands are twined to create fabrics that are both beautiful and strong. This reflects our findings that the parts of life that are most important to wellbeing for many Aboriginal and Torres Strait Islander people are interwoven with their families, communities and culture.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection, holistic health, purpose and control, dignity and respect, and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.

Despite the health improvements afforded to non-Indigenous peoples in Canada, Aotearoa (New Zealand) and the United States, the Indigenous peoples in these countries continue to endure disproportionately high rates of mortality and morbidity. Indigenous peoples’ concepts and understanding of health and wellbeing are holistic; however, due to their diverse social, political, cultural, environmental and economic contexts within and across countries, wellbeing is not experienced uniformly across all Indigenous populations. We aim to identify aspects of wellbeing important to the Indigenous people in Canada, Aotearoa and the United States. We searched CINAHL, Embase, PsycINFO and PubMed databases for papers that included key Indigenous and wellbeing search terms from database inception to April 2020. Papers that included a focus on Indigenous adults residing in Canada, Aotearoa and the United States, and that included empirical qualitative data that described at least one aspect of wellbeing were eligible. Data were analysed using the stages of thematic development recommended by Thomas and Harden for thematic synthesis of qualitative research. Our search resulted in 2669 papers being screened for eligibility. Following full-text screening, 100 papers were deemed eligible for inclusion (Aotearoa (New Zealand) n = 16, Canada n = 43, United States n = 41). Themes varied across countries; however, identity, connection, balance and self-determination were common aspects of wellbeing. Having this broader understanding of wellbeing across these cultures can inform decisions made about public health actions and resources.

Measuring Early Learning Quality & Outcomes (MELQO) was initiated to address needs for child development and quality of early childhood education (ECE) data, specifically for low- and middle-income...

This paper explores the economics of solar-plus-storage projects for commercial-scale, behind-the-meter applications. It provides insight into the near-term and future solar-plus-storage market opportunities across the U.S. We explore the impacts of location, building load profile, technology cost, utility rate structure, and policies on solar-plus-storage economic viability, and identify which factors are most significant to project economics. While savings from storage-only projects are largely derived from demand charge reductions, solar combined with storage also provides significant energy charge savings. A common assumption is that load profiles with peaks are likely candidates for savings from storage, due to the opportunity for demand charge reduction. Our results indicate that potential for savings from combining solar with storage is independent of building load variability, likely due to the energy cost reductions from the solar. Systems are more often economical under time of use and demand charge rates, particularly when demand charges are >$10 per kilowatt. Where systems were found to be economical, expected lifetime savings averaged between 7%–10%, with savings of 30% in numerous cases. Near term markets exist for solar-plus-storage in locations such as California and New York. As technology prices drop, the number of building types that can benefit increase, and additional markets appear in Colorado, New Mexico, and Alaska. All data from the study and interactive modeling results are available at: https://openei.org/wiki/Solar+Storage .

Decreasing electric grid reliability in the US, along with increasing severe weather events, have greatly increased interest in resilient energy systems. Few studies have included the value of resilience when sizing PV and Battery Energy Storage Systems (BESS), and none have included the cost to island a PV and BESS, grid-connected costs and benefits, and the value of resilience. This work presents a novel method for incorporating the value of resilience provided by a PV and BESS into a techno-economic optimization model. Including the value of resilience in the design of a cost-optimal PV and BESS generally increases the system capacities, and in some cases makes a system economical where it was not before. For example, for a large hotel in Anaheim, CA no system is economical without resilience valued; however, with a $5317/hr value of resilience a 363 kW and 60 kWh solar and BESS provides a net present value of $50,000. Lastly, we discuss the effect of the ”islandable premium”, which must be balanced against the benefits from serving critical loads during outages. Case studies show that the islandable premium can vary widely, which highlights the necessity for case-by-case solutions in a rapidly developing market.

BackgroundPoorer cancer outcomes of Indigenous Australians in Australia’s Northern Territory (NT) compared with their non-Indigenous counterparts are partially due to diminished access to cancer treatment services (CTS). Accessibility of health care is a multidimensional construct, including physical, logistical, psychosocial and cultural dimensions. While previous research has identified specific areas of reduced access to CTS for Indigenous Australians, the higher burden of cancer borne by Indigenous Australians warrants a more comprehensive understanding of access to CTS in the NT. The purpose of this study was to explore and map the accessibility of CTS for Indigenous Australians in the NT and to identify key access barriers.MethodsThis predominantly qualitative study, complemented by a descriptive quantitative component, explored and mapped the accessibility of one CTS (CTS-NT) that services a large number of Indigenous Australians in the NT. Patient perspectives were obtained via secondary analysis of data from 75 face-to-face interviews with Indigenous Australian adults attending the CTS-NT. Care provider perspectives were obtained via primary analysis of data from 29 face-to-face interviews with care providers and staff working at CTS-NT. Data were analysed to identify issues of accessibility informed by Leveque and colleagues’ conceptual framework of access to health care, which comprises five dimensions ofaccessibilityof the health service and theabilityof Indigenous patients to interact with these dimensions to generate access. Applied thematic analysis was conducted on the qualitative data and descriptive analysis was conducted on the quantitative data.ResultsThe analysis of the patient and care provider reports identified multiple access barriers across all dimensions including: inadequate preparation of Indigenous patients for treatment; delayed and complicated commencement of treatment; dislocation from home; competing priorities; scarcity of Indigenous care providers and staff; lack of culturally-relevant care; challenges associated with language, accommodation, transport and finance; and disjointed and fraught relationships with care providers. These barriers posed significant challenges to Indigenous patients maintaining their engagement with treatment.ConclusionsThis study provides a valuable snapshot of the barriers facing this population across the dimensions of health care access. Urgent action in addressing these issues is required at individual, service and state levels.