Relevance and Premises of Values-Based Practice for Decision Making in Brain Health.

Brain health is a complex concept, shaped by a plethora of determinants related to physical health, healthy environments, safety and security, learning and social connection, as well as access to quality healthcare services. Decision-making in this complex field is characterized by diverse values, potentially conflicting interests, and asymmetrically influential stakeholders. Values-based practice (VBP) is a toolkit for balancing values in a democratic and inclusive way, so that every stakeholder feels a sense of ownership over the decision made. In VBP, the emphasis is on good process rather than on pre-determined 'correct' outcomes. Based on two case vignettes, we highlight the relevance of the ten principles of VBP for balancing different values to the satisfaction of those directly concerned, in a given decision-making process. In addition, we argue that the successful implementation of VBP in the complex area of brain health, as well as in other fields, is premised on higher order values (meta-values), beyond mutual respect and the legal, regulatory, and bioethical framework. These include mutual regard, reciprocity, autonomy, and an egalitarian attitude towards VBP procedures and involved stakeholders.

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.

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.

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.

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.

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.

Phase II, double blind, placebo controlled, multi-site study to evaluate the safety, feasibility and desirability of conducting a phase III study of anamorelin for anorexia in people with small cell lung cancer: A study protocol (LUANA trial).

Anorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13-24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC); newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. Trial registration. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]. https://clin.larvol.com/trial-detail/ACTRN12622000129785.

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.

What If Caregivers' Subsequent Workforce Participation Was a Measure of Palliative Care Services' Impact? An Hypothesis-Generating Study.

Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews. Setting/Participants: People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. Questions included experiences of people dying an expected death and whether interviewees provided care. Demographic data included current workforce participation. A regression model explored associations with workforce participation. Results: Of 8945 interviews over three years, 171 participants aged 20-60 years (working age) provided intermittent hands-on care: two in five were men and two in three had qualifications beyond high school; one in two decedents had accessed palliative care services. Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54). Conclusion: An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services.

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.

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.

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.

Cost-effectiveness of a community-based integrated care model compared with usual care for older adults with complex needs: a stepped-wedge cluster-randomised trial.

Objective: To assess the cost of implementation, delivery and cost-effectiveness (CE) of a flagship community-based integrated care model (OPEN ARCH) against the usual primary care. Design: A 9-month stepped-wedge cluster-randomised trial. Setting and participants: Community-dwelling older adults with chronic conditions and complex care needs were recruited from primary care (14 general practices) in Far North Queensland, Australia. Methods: Costs and outcomes were measured at 3-month windows from the healthcare system and patient's out-of-pocket perspectives for the analysis. Outcomes included functional status (Functional Independence Measure (FIM)) and health-related quality of life (EQ-5D-3L and AQoL-8D). Bayesian CE analysis with 10 000 Monte Carlo simulations was performed using the BCEA package in R (V.3.6.1). Results: The OPEN ARCH model of care had an average cost of $A1354 per participant. The average age of participants was 81, and 55% of the cohort were men. Within-trial multilevel regression models adjusted for time, general practitioner cluster and baseline confounders showed no significant differences in costs, resource use or effect measures regardless of the analytical perspective. Probabilistic sensitivity analysis with 10 000 simulations showed that OPEN ARCH could be recommended over usual care for improving functional independence at a willing to pay above $A600 (US$440) per improvement of one point on the FIM Scale and for avoiding or reducing inpatient stay for any willingness-to-pay threshold up to $A50 000 (US$36 500). Conclusions and implications: OPEN ARCH was associated with a favourable Bayesian CE profile in improving functional status and dependency levels, avoiding or reducing inpatient stay compared with usual primary care in the Australian context. Trial registration number: ACTRN12617000198325.

Developing a core outcome set (COS) for Dementia with Lewy bodies (DLB).

Background: Dementia with Lewy bodies (DLB) is an important cause of dementia with a range of clinical manifestations, including motor, neuropsychiatric, and autonomic symptoms. Compared with more common forms of dementia such as Alzheimer's disease, DLB has been the focus of significantly fewer treatment studies, often with diverse outcome measures, making comparison and clinical implementation difficult. A core outcome set (COS) can address this by ensuring that data are comparable, relevant, useful, and usable for making the best healthcare decisions. Methods: Using a multi-stage approach, development of the DLB-COS will include the following stages: (1) A systematic review, following PRISMA guidelines to create an initial long list of outcomes; (2) A two-round online Delphi including clinicians, scientists, policymakers, and individuals with lived experience of DLB and their representatives; (3) An online consensus meeting to agree on the final core list of outcomes (the final DLB-COS) for use in research and clinical practice; (4) A systematic review to identify appropriate measurement instruments for the DLB-COS outcomes; (5) A final consensus meeting of the professional stakeholders who attended the online consensus meeting to agree on the instruments that should be used to measure the outcomes in the DLB-COS; and (6) Global dissemination. Discussion: This is a multi-stage project to develop a COS to be used in treatment trials for DLB. A DLB-COS will ensure the selection of relevant outcomes and will identify the instruments to be used to measure DLB globally. Keywords: Dementia, Dementia with Lewy Bodies, Core Outcome Set, Delphi, Systematic Review, Ageing, Cognition, Memory.

What does a "good life" mean for people living with dementia? A protocol for a think-aloud study informing the value of care.

Introduction: Economic evaluation currently focuses almost exclusively on the maximization of health, using the Quality-Adjusted Life-Year (QALY) framework with instruments such as the EQ-5D, with a limited number of health-focused dimensions providing the assessment of health benefit. This evaluative framework is likely to be insufficient for setting priorities in dementia care because of its exclusive concern with health. Data are also often collected from the perspective of a proxy, limiting the voice of those living with dementia in decision-making. This protocol describes a research project that aims to gather the perspectives of people living with dementia, their insights, and preferences for assessing their quality of life to inform economic evaluation outcome measurement and design with a goal of creating a more robust evidence base for the value of healthcare services. Specifically, this study will elucidate what a "good life" means to people living with dementia and how well instruments currently used in economic evaluation meet this description. This project will further test the acceptability of capability wellbeing instruments as self-report instruments and compare them to generic and dementia-specific preference-based instruments. Methods and analysis: People living with dementia, diagnosed, or waiting to receive a formal diagnosis and with the capacity to participate in research, will be invited to participate in an hour "think aloud" interview. Participants will be purposefully selected to cover a range of dementia diagnoses, age, and sex, recruited through the integrated care, geriatric, and post-diagnostic clinics at St James' and Tallaght University Hospitals and dementia support groups in the Ireland. During the interview, participants will be invited to reflect on a "good life" and "think aloud" while completing four economic quality of life instruments with a perspective that goes beyond health (AD-5D/QOL-AD, AQOL-4D, ICECAP-O, ICECAP-SCM). An interviewer will then probe areas of difficulty when completing the instruments in a semi-structured way. The analysis will identify the frequency of errors in comprehension, retrieval, judgment, and response from verbatim transcripts. Qualitative data will be analyzed using constant comparison. Ethics: The St James's Hospital and Tallaght University Hospital Joint Research Ethics Committee approved the study (Approval Date: 11 April 2022).

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.