Dissonance in the face of Alzheimer's disease breakthroughs: clinician and lay stakeholder acceptance, concerns and willingness to pay for emerging disease-modifying therapies.

BACKGROUND: Introducing new disease-modifying therapies (DMTs) for Alzheimer's disease demands a fundamental shift in diagnosis and care for most health systems around the world. Understanding the views of health professionals, potential patients, care partners and taxpayers is crucial for service planning and expectation management about these new therapies. AIMS: To investigate the public's and professionals' perspectives regarding (1) acceptability of new DMTs for Alzheimer's disease; (2) perceptions of risk/benefits; (3) the public's willingness to pay (WTP). METHOD: Informed by the 'theoretical framework of acceptability', we conducted two online surveys with 1000 members of the general public and 77 health professionals in Ireland. Descriptive and multivariate regression analyses examined factors associated with DMT acceptance and WTP. RESULTS: Healthcare professionals had a higher acceptance (65%) than the general public (48%). Professionals were more concerned about potential brain bleeds (70%) and efficacy (68%), while the public focused on accessibility and costs. Younger participants (18-24 years) displayed a higher WTP. Education and insurance affected WTP decisions. CONCLUSIONS: This study exposes complex attitudes toward emerging DMTs for Alzheimer's disease, challenging conventional wisdom in multiple dimensions. A surprising 25% of the public expressed aversion to these new treatments, despite society's deep-rooted fear of dementia in older age. Healthcare professionals displayed nuanced concerns, prioritising clinical effectiveness and potential brain complications. Intriguingly, younger, better-educated and privately insured individuals exhibited a greater WTP, foregrounding critical questions about healthcare equity. These multifaceted findings serve as a guidepost for healthcare strategists, policymakers and ethicists as we edge closer to integrating DMTs into Alzheimer's disease care.

Navigating the future of Alzheimer's care in Ireland - a service model for disease-modifying therapies in small and medium-sized healthcare systems.

BACKGROUND: A new class of antibody-based drug therapy with the potential for disease modification is now available for Alzheimer's disease (AD). However, the complexity of drug eligibility, administration, cost, and safety of such disease modifying therapies (DMTs) necessitates adopting new treatment and care pathways. A working group was convened in Ireland to consider the implications of, and health system readiness for, DMTs for AD, and to describe a service model for the detection, diagnosis, and management of early AD in the Irish context, providing a template for similar small-medium sized healthcare systems. METHODS: A series of facilitated workshops with a multidisciplinary working group, including Patient and Public Involvement (PPI) members, were undertaken. This informed a series of recommendations for the implementation of new DMTs using an evidence-based conceptual framework for health system readiness based on [1] material resources and structures and [2] human and institutional relationships, values, and norms. RESULTS: We describe a hub-and-spoke model, which utilises the existing dementia care ecosystem as outlined in Ireland's Model of Care for Dementia, with Regional Specialist Memory Services (RSMS) acting as central hubs and Memory Assessment and Support Services (MASS) functioning as spokes for less central areas. We provide criteria for DMT referral, eligibility, administration, and ongoing monitoring. CONCLUSIONS: Healthcare systems worldwide are acknowledging the need for advanced clinical pathways for AD, driven by better diagnostics and the emergence of DMTs. Despite facing significant challenges in integrating DMTs into existing care models, the potential for overcoming challenges exists through increased funding, resources, and the development of a structured national treatment network, as proposed in Ireland's Model of Care for Dementia. This approach offers a replicable blueprint for other healthcare systems with similar scale and complexity.

Cost-effectiveness of clinical interventions for delirium: A systematic literature review of economic evaluations.

OBJECTIVE: Little is known about the economic value of clinical interventions for delirium. This review aims to synthesise and appraise available economic evidence, including resource use, costs, and cost-effectiveness of interventions for reducing, preventing, and treating delirium. METHODS: Systematic review of published and grey literature on full and partial economic evaluations. Study quality was assessed using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS). RESULTS: Fourteen economic evaluations (43% full, 57% partial) across nine multicomponent and nonpharmacological intervention types met inclusion criteria. The intervention costs ranged between US$386 and $553 per person in inpatient settings. Multicomponent delirium prevention intervention and the Hospital Elder Life Program (HELP) reported statistically significant cost savings or cost offsets somewhere else in the health system. Cost savings related to inpatient, outpatient, and out-of-pocket costs ranged between $194 and $6022 per person. The average CHEERS score was 74% (±SD 10%). CONCLUSION: Evidence on a joint distribution of costs and outcomes of delirium interventions was limited, varied and of generally low quality. Directed expansion of health economics towards the evaluation of delirium care is necessary to ensure effective implementation that meets patients' needs and is cost-effective in achieving similar or better outcomes for the same or lower cost.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

OBJECTIVES: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English-speaking regions: Before and during the COVID-19 pandemic.

BACKGROUND: Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English-speaking regions worldwide, by investigating outcomes before and during the COVID-19 pandemic. METHODS: A cross-sectional anonymous online survey data from 2287 English-speaking caregivers of people with long term health conditions from four English-speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID-19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. RESULTS: Compared to pre-pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). CONCLUSIONS: Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic-related restrictions.

Lower workforce participation is associated with more severe persisting breathlessness.

BACKGROUND: Not being able to work has negative health, social and financial consequences. Persisting breathlessness is prevalent in working-aged people. Is it associated with lower workforce participation? This study, using the South Australian Health Omnibus, aimed to explore associations between paid workforce participation and persisting breathlessness intensity, and economic impacts on income in people of working age. METHODS: This cross-sectional study conducted face-to-face interviews with a random sample of adults in South Australia (n = 8916). Questions included key demographic data, workforce participation and the presence and intensity of persisting breathlessness. Data from working-aged respondents (20-65 years of age) were standardised to the census for regression analyses. Work was coded to paid full- or part-time work or 'other'. Persisting breathlessness (more than three of the last six months) used the modified Medical Research Council breathlessness scale (aggregated to 0, 1, 2-4). Opportunity cost valuations compared annual income foregone by persisting breathlessness severity. RESULTS: Of people interviewed, 6,608 were working-aged (49.9% male; 67.5% had post-secondary qualifications; 70.9% were in paid full- or part-time work; and 1.7% had mMRC score 2-4). Workforce participation dropped in working aged people with increasing breathlessness: mMRC 0, 70.6%; mMRC 1, 51.7%; mMRC 2-4, 20.3%. In the regression model, people with the most severe breathlessness were much less likely to work (OR 0.14; 95% CI 0.09, 0.22). Annual income foregone by people with persisting breathlessness was AU$10.7 billion (AU$9.1b for full-time and AU$1.6b for part-time work; range AU$5.9b, AU$49.7b). CONCLUSION: Worsening persisting breathlessness is associated with lower workforce participation with direct financial consequences, greatest for older males.

Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis.

BACKGROUND: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for 'accessible and flexible' models of care that are 'responsive' to peoples' changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. AIM: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. DESIGN: A systematic review of systematic reviews ('meta-review'). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. DATA SOURCES: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. RESULTS: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. CONCLUSIONS: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. SYSTEMATIC REVIEW REGISTRATION NUMBER: Prospero CRD42020200266.

The economic cost of delirium: A systematic review and quality assessment.

INTRODUCTION: This review aims to systematically identify and appraise the methodological quality of claims on the cost of delirium; and discuss challenges and opportunities for improvements in the precision of the estimates. METHODS: Searches of scientific papers and gray literature were performed up until June 2020. The Larg and Moss checklist was used to assess the methodological quality of the included studies. RESULTS: After deduplication, the search identified 317 potentially relevant articles, of which 17 articles were eligible for inclusion. After adjusting for inflation and common currency, the cost of delirium ranged between $806 and $24,509 (in 2019 US$). DISCUSSION: This review found significant variation among the cost estimates and methodological quality. There has been limited focus on dementia as a sequela of delirium in terms of economic implications, but recent evidence suggests cost implications of delirium may be 52% higher when dementia is considered.

A rapid review of evidence to inform an ear, nose and throat service delivery model in remote Australia.

INTRODUCTION: This rapid literature review aimed to inform the development of a new sustainable, evidence-based service delivery model for ear, nose and throat (ENT) services across Cape York, Australia. This work seeks to investigate the research question: 'What are the characteristics of successful outreach services which can be applied to remote living Indigenous children?' METHODS: A comprehensive search of three major electronic databases (PubMed, CINAHL and MEDLINE) and two websites (HealthInfo Net and Google Scholar) was conducted for peer-reviewed and grey literature, to elicit characteristics of ENT and hearing services in rural and remote Australia, Canada, New Zealand and the USA. The search strategy was divided into four sections: outreach services for rural and remote communities; services for Indigenous children and families; telehealth service provision; and remote ear and hearing health service models. A narrative synthesis was used to summarise the key features of the identified service characteristics. RESULTS: In total, 71 studies met the inclusion criteria and were included in the review, which identified a number of success and sustainability traits, including employment of a dedicated ear and hearing educator; outreach nursing and audiology services; and telehealth access to ENT services. Ideally, outreach organisations should partner with local services that employ local Indigenous health workers to provide ongoing ear health services in community between outreach visits. CONCLUSION: The evidence suggests that sound and sustainable ENT outreach models build on existing services; are tailored to local needs; promote cross-agency collaboration; use telehealth; and promote ongoing education of the local workforce.

The cost of hospitalisation for youth self-harm: differences across age groups, sex, Indigenous and non-Indigenous populations.

OBJECTIVE: To report the comparative rates, average length of stay and cost per episode of hospital management for self-harm in three age cohorts: 15-19 years, 20-24 years and 25-29 years; by sex and indigeneity. DESIGN, SETTING, PARTICIPANTS: A secondary data analysis of the Australian Institute of Health and Welfare (AIHW) dataset between 1st January 2014 and 31st December 2014 inclusive. MAIN OUTCOME MEASURES: Cost per episode of hospitalised self-harm and rates by age group, sex and Indigenous status. RESULTS: The rate of hospitalised self-harm among Australian youth was 254.0 per 100,000 population. This rate resulted in an annual cost to the healthcare system of AU$55 million or an average cost per episode of $4649 (95% CI $4488:$4810). Hospitalised self-harm was 21 times higher than the rate of suicide (11,820 episodes of hospitalised self-harm/564 suicides). Indigenous youth had on average a 1.4 times higher rate of hospitalised self-harm and 2.2 times higher rate of suicide than non-Indigenous counterparts. When controlling for age and sex, the average cost per episode was significantly lower for Indigenous youth compared to non-Indigenous youth, estimated marginal means $4538 and $4954, respectively (p < 0.001). CONCLUSIONS: Hospitalised self-harm among Australian youth resulted in a substantial cost to the healthcare system. This cost is only part of the overall burden associated with self-harm. The rate of hospitalised self-harm was significantly higher in Indigenous youth, but the associated cost per episode was significantly lower.

Does Indigenous health research have impact? A systematic review of reviews.

BACKGROUND: Aboriginal and Torres Strait Islander Australians (hereafter respectfully Indigenous Australians) claim that they have been over-researched without corresponding research benefit. This claim raises two questions. The first, which has been covered to some extent in the literature, is about what type(s) of research are likely to achieve benefits for Indigenous people. The second is how researchers report the impact of their research for Indigenous people. This systematic review of Indigenous health reviews addresses the second enquiry. METHODS: Fourteen electronic databases were systematically searched for Indigenous health reviews which met eligibility criteria. Two reviewers assessed their characteristics and methodological rigour using an a priori protocol. Three research hypotheses were stated and tested: (1) reviews address Indigenous health priority needs; (2) reviews adopt best practice guidelines on research conduct and reporting in respect to methodological transparency and rigour, as well as acceptability and appropriateness of research implementation to Indigenous people; and (3) reviews explicitly report the incremental impacts of the included studies and translation of research. We argue that if review authors explicitly address each of these three hypotheses, then the impact of research for Indigenous peoples' health would be explicated. RESULTS: Seventy-six reviews were included; comprising 55 journal articles and 21 Australian Government commissioned evidence review reports. While reviews are gaining prominence and recognition in Indigenous health research and increasing in number, breadth and complexity, there is little reporting of the impact of health research for Indigenous people. This finding raises questions about the relevance of these reviews for Indigenous people, their impact on policy and practice and how reviews have been commissioned, reported and evaluated. CONCLUSIONS: The findings of our study serve two main purposes. First, we have identified knowledge and methodological gaps in documenting Indigenous health research impact that can be addressed by researchers and policy makers. Second, the findings provide the justification for developing a framework allowing researchers and funding bodies to structure future Indigenous health research to improve the reporting and assessment of impact over time.

Systematic review of youth mental health service integration research.

Quality mental health care is based on the integration of care across organisations and disciplines. The aims of this study were, first, to assess the extent, characteristics and reported outcomes of publications concerned with youth mental health service integration in Australia and internationally; and second, to investigate the study design quality of evaluative interventions and determine whether the studies report on the cost-effectiveness of the integration in order to inform the reform of youth mental health services by Queensland Health. A systematic search of the peer-reviewed literature and a narrative synthesis were undertaken of English language publications from 21 electronic databases. Inclusion criteria were: published 1998-2014 (inclusive); peer-reviewed research; focused on mental health services integration; reported data for youth aged 12-25 years. The methodological quality of evaluative interventions was assessed using the Quality Assessment Tool for Quantitative Studies developed by the Effective Public Health Practice Project (EPHPP). Twenty-five studies met the inclusion criteria: one (4%) was classified as a measurement research, 13 (52%) as descriptive, and 11 (44%) as interventions including five (45%) evaluative interventions. Four out of the five evaluative interventions reported positive effects of youth mental health service integration. Particular problems included ambiguity of definitions, absence of economic or cost analyses and insufficient consumer involvement. The methodological quality of the interventions was variable with, on average, a moderate level of selection bias and study design. Despite a slight increase in the number of studies in the last couple of years, there are important gaps in the evidence base for youth mental health service integration processes. The relatively small number of evaluative studies and lack of economic evaluations point to the need for additional research in this important area.

No one's discussing the elephant in the room: contemplating questions of research impact and benefit in Aboriginal and Torres Strait Islander Australian health research.

BACKGROUND: There remains a concern that Indigenous Australians have been over-researched without corresponding improvements in their health; this trend is applicable to most Indigenous populations globally. This debate article has a dual purpose: 1) to open a frank conversation about the value of research to Indigenous Australian populations; and 2) to stimulate ways of thinking about potential resolutions to the lack of progress made in the Indigenous research benefit debate. DISCUSSION: Capturing the meaning of research benefit takes the form of ethical value-oriented methodological considerations in the decision-making processes of Indigenous research endeavours. Because research practices come from Western knowledge bases, attaining such positions in research means reconciling both Indigenous and Western knowledge systems to produce new methodologies that guide planning, evaluating and monitoring of research practices as necessary. Increasingly, more sophisticated performance measures have been implemented to ensure academic impact and benefits are captured. Assessing societal and other non-academic impacts and benefits however, has not been accorded corresponding attention. Research reform has only focussed on research translation in more recent years. The research impact debate must take account of the various standards of accountability (to whom), impact priorities (for whom), positive and negative impacts, and biases that operate in describing impact and measuring benefit. SUMMARY: A perennial question in Indigenous research discourse is whether the abundance of research conducted; purportedly to improve health, is justified and benefits Indigenous people in ways that are meaningful and valued by them. Different research stakeholders have different conceptions of the value and nature of research, its conduct, what it should achieve and the kinds of benefits expected. We need to work collaboratively and listen more closely to the voice of Indigenous Australians to better understand, demonstrate and measure health research benefits. The authors conclude that as an imperative, a systematic benefit assessment strategy that includes identification of research priorities and planning, monitoring and evaluation components needs to be developed and implemented across research projects. In Indigenous health research, this will often mean adopting a benefit-led approach by changing the way research is done and preferencing alternative research methodologies. As a point of departure to improving impact and reaching mutually beneficial outcomes for researchers and partners in Indigenous health research, we need to routinise the assessment of benefit from outset of research as one of the standards toward which we work.

The high cost of care and limited evidence on cost-effective strategies for Lewy body dementia: systematic review of evidence.

BACKGROUND: Lewy body dementia (LBD) is a prevalent yet frequently underdiagnosed form of dementia, accounting for up to 15% of all dementia cases. AIMS: This study aims to increase awareness and advocacy for LBD by gathering and critically assessing the economic evidence, including the cost of illness and cost-effectiveness of interventions for managing LBD. METHOD: A systematic literature review was undertaken with EMBASE, Medline, CINAHL, PsycINFO, NHS Economic Evaluation Database and EconLit. This search was supplemented by grey literature on Google Scholar and reviewing the reference lists of identified studies. The papers included in the review were published between 2008 and 2023, and involved participants with LBD (dementia with Lewy bodies or Parkinson's disease dementia), which either addressed the cost of illness or conducted an economic evaluation. RESULTS: Thirteen papers were included, comprising ten cost-of-illness studies and three economic evaluations. The cost of LBD tends to be higher than that of other forms of dementia, such as Alzheimer's disease, and these costs escalate more steeply as the disease progresses. These cost differences may not be solely influenced by the subtype of dementia, but possibly also by patient characteristics like physical and cognitive abilities. Cost-effectiveness of potential interventions for LBD is limited. CONCLUSIONS: Despite numerous drug trials and other interventions for dementia, very few have targeted LBD, let alone explored the cost-effectiveness of such therapies for LBD. This disparity highlights the urgent need for cost-effective strategies and interventions targeting LBD. We propose the establishment of universally accepted standards for LBD research.

The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

Prevalence, severity and impacts of breathlessness in Indian adults: An exploratory, nationally representative, cross-sectional online survey.

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation's Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities.

Support needs of Australians bereaved during the COVID-19 pandemic: A cross-sectional survey study.

BACKGROUND: COVID-19 disrupted access to bereavement support. The objective of this study was to identify the bereavement supports used by Australians during the COVID-19 pandemic, perceived helpfulness of supports used, prevalence and areas of unmet support need, and characteristics of those with unmet support needs. METHODS: A convenience sample of bereaved adults completed an online questionnaire (April 2021-April 2022) about their bereavement experiences including support use and perceived helpfulness, unmet support needs and mental health. Multiple logistic regression was conducted to determine sociodemographic correlates of unmet needs. Open-ended responses were examined using content analysis to determine key themes. RESULTS: 1,878 bereaved Australians completed the questionnaire. Participants were mostly women (94.9%) living in major cities (68%) and reported the death of a parent (45%), with an average age of 55.1 years (SD = 12.2). The five most used supports were family and friends, self-help resources, general practitioners, psychologists, and internet/online community groups. Notably, each was nominated as most helpful and most unhelpful by participants. Two-thirds (66%) reported specific unmet support needs. Those with unmet needs scored lower on mental health measures. Correlates of unmet needs included being of younger age, being a spouse or parent to the deceased; reporting more impacts from public health measures, and not reporting family and friends as supports. The most frequent unmet need was for social support after the death and during lockdown. CONCLUSIONS: This study demonstrates the complexity of bereavement support needs during a pandemic. Specialised grief therapy needs to be more readily available to the minority of grievers who would benefit from it. A clear recommendation for a bereavement support action plan is to bolster the ability of social networks to provide support in times of loss. The fostering of social support in the wake of bereavement is a major gap that needs to be addressed in practice, policy, and research.

The application of discrete choice experiments eliciting young peoples' preferences for healthcare: a systematic literature review.

OBJECTIVES: Understanding young people's preferences for healthcare is critical for reducing the negative effect of undesirable choices. This review aims to synthesise the evidence obtained from discrete choice experiments (DCEs) eliciting young people's preferences for healthcare interventions and service deliveries, specifically, to (1) examine the methodology, including a selection of attributes and levels, experimental design, estimation procedure and validity; (2) evaluate similarities, differences and rigour of designs to the general population DCEs; and, (3) compare the DCEs' application to the seven health priority areas defined by the World Health Organisation (WHO). METHODS: A systematic review searching Medline, EconLIT, PsychINFO, Scopus, and Web of Science was performed up until May 2021. INCLUSION CRITERIA: a DCE, eliciting young peoples' preferences (10-24 years of age), on a healthcare-related topic defined by WHO, peer-reviewed, full-text available in English. A bespoke checklist was used to assess the methodological quality of the included studies. RESULTS: Eighteen DCE studies were included in the review, exploring interventions and service in sexual and reproductive health (n = 9; 50%), smoking cessation (n = 4; 22%), mental health (n = 1), nutrition (n = 1), unintentional injuries (n = 1), vaccination against severe but rare diseases (n = 1); and diabetes (n = 1). Compared to the general population, DCEs eliciting young people's preferences had a high proportion of monetary measures and a smaller number of choices per respondent with the overwhelming number of surveys using fractional factorial design. The majority of studies were of moderate quality (50-75% of the criteria met). CONCLUSIONS: While identified DCEs touched on most health priority areas, the scope was limited. The conduct and reporting of DCEs with young people could be improved by including the state-of-the-art design, estimation procedures and analysis.