Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment.

OBJECTIVES: Informal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. METHODS: Attributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to "hours of care provided" and the "monetary compensation from the government." A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. RESULTS: Based on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. CONCLUSION: The estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Sleeping Sound Autism Spectrum Disorder (ASD): Cost-Effectiveness of a Brief Behavioural Sleep Intervention in Primary School-Aged Autistic Children.

Disordered sleep is common in autistic children. This study aimed to evaluate the cost-effectiveness of a brief behavioural sleep intervention, the 'Sleeping Sound intervention', in primary school-aged autistic children in Australia. A cost-effectiveness analysis was undertaken alongside a randomised controlled trial over a 6-month follow-up period from both a societal and healthcare sector perspective. Resources used by participants were collected from a resource-use questionnaire and administrative data; intervention costs were determined from study records. Mean costs and quality-adjusted life-years (QALYs) were compared between the intervention and treatment as usual (TAU) groups. Uncertainty analysis using bootstrapping and sensitivity analyses were conducted. The sample included 245 children, with 123 participants randomised to the intervention group and 122 to TAU. The mean total costs were higher for the Sleeping Sound intervention with a mean difference of A$745 (95% CI 248; 1242; p = 0.003) from a healthcare sector perspective and A$1310 (95% CI 584; 2035, p < 0.001) from a societal perspective. However, the intervention also resulted in greater QALYs compared with TAU, with a mean difference of 0.038 (95% CI 0.004; 0.072; p = 0.028). The incremental cost-effectiveness ratio was A$24,419/QALY (95% CI 23,135; 25,703) from a healthcare sector perspective and A$41,922/QALY (95% CI 39,915; 43,928) from a societal perspective; with a probability of being cost-effective of 93.8% and 74.7%, respectively. Findings remained robust in the sensitivity analyses. The Sleeping Sound intervention offers a cost-effective approach in improving sleep in primary school-aged autistic children.Trial registration The trial was registered with the International Trial Registry (ISRCTN14077107).

What is the economic and social return on investment for telephone cancer information and support services in Australia? An evaluative social return on investment study protocol.

INTRODUCTION: Over 50% of people affected by cancer report unmet support needs. To address unmet information and psychological needs, non-government organisations such as Cancer Councils (Australia) have developed state-based telephone cancer information and support services. Due to competing demands, evidence of the value of these services is needed to ensure that future investment makes the best use of scarce resources. This research aims to determine the costs and broader economic and social value of a telephone support service, to inform future funding and service provision. METHODS AND ANALYSIS: A codesigned, evaluative social return on investment analysis (SROI) will be conducted to estimate and compare the costs and monetised benefits of Cancer Council Victoria's (CCV) telephone support line, 13 11 20, over 1-year and 3-year benefit periods. Nine studies will empirically estimate the parameters to inform the SROI and calculate the ratio (economic and social value to value invested): step 1 mapping outcomes (in-depth analysis of CCV's 13 11 20 recorded call data; focus groups and interviews); step 2 providing evidence of outcomes (comparative survey of people affected by cancer who do and do not call CCV's 13 11 20; general public survey); step 3 valuing the outcomes (financial proxies, value games); step 4 establishing the impact (Delphi); step 5 calculating the net benefit and step 6 service improvement (discrete choice experiment (DCE), 'what if' analysis). Qualitative (focus groups, interviews) and quantitative studies (natural language processing, cross-sectional studies, Delphi) and economic techniques (willingness-to-pay, financial proxies, value games, DCE) will be applied. ETHICS AND DISSEMINATION: Ethics approval for each of the studies will be sought independently as the project progresses. So far, ethics approval has been granted for the first two studies. As each study analysis is completed, results will be disseminated through presentation, conferences, publications and reports to the partner organisations.

The association between loneliness with health service use and quality of life among informal carers in Australia.

OBJECTIVE: The demanding nature of caregiving and limited social support can lead to informal carers experiencing loneliness, which can impact their well-being and overall health service use (HSU). The study aims to examine the association between loneliness with HSU and Health state utility values among informal carers in Australia. METHODS: Data were derived from three waves (2009, 2013, and 2017) of the nationally representative longitudinal Household Income and Labour Dynamics of Australia (HILDA) survey, focusing on adult informal carers. Outcome measures included visits to the General Practitioner, the number of hospital admissions, and the SF-6D score. Generalized Estimating Equations (GEE) analysis was conducted to explore the associations between loneliness and HSU, as well as loneliness and utility values (based on SF-6D) while adjusting for age, sex, education, marital status, income, and physical/mental health conditions. RESULTS: After controlling for covariates, lonely carers reported lower utility values (IRR = 0.91, 95%CI [0.89, 0.93], p < 0.001) compared to non-lonely carers. Lonely carers reported a higher number of GP visits (IRR = 1.18, 95% CI [1.04, 1.36], p < 0.05) as well as a higher likelihood of visiting specialists (AOR = 1.31, p = 0.046) and hospital doctors (AOR = 1.42, p = 0.013) compared to the non-lonely carers. CONCLUSIONS: The findings of this study highlight the relationship between loneliness on both healthcare utilization and carers' overall well-being. Addressing loneliness through targeted interventions and social support systems can help improve health outcomes and potentially reduce the overall healthcare costs among informal carers in Australia.

Health Fluctuations in Dementia and its Impact on the Assessment of Health-Related Quality of Life Using the EQ-5D-5L.

OBJECTIVES: To quantify health fluctuations, identify affected health-related quality of life (HRQoL) dimensions, and evaluate if fluctuations affect the HRQoL instruments recall period adherence in people living with dementia (PlwD). METHODS: Caregivers of PlwD completed a daily diary for 14 days, documenting if PlwD's health was better or worse than the day before and the affected HRQoL dimensions. Health fluctuation was categorized into low (0-4 fluctuations in 14 days), moderate (5-8), and high (9-14). Also, caregivers and PlwD completed the EQ-5D-5L (proxy- and self-reported) on days 1, 7, and 14. Subsequently, caregivers were interviewed to determine whether recurrent fluctuations were considered in the EQ-5D-5L assessment of today's health (recall period adherence). RESULTS: Fluctuations were reported for 96% of PlwD, on average, for 7 of the 14 days. Dimensions most frequently triggering fluctuations included memory, mobility, concentration, sleep, pain, and usual activities. Fluctuations were associated with higher EQ-5D-5L health-states variation and nonadherence to the EQ-5D-5L recall period "today." PlwD with moderate to high fluctuation had the highest EQ-5D-5L utility change between day 1 and 14 (0.157 and 0.134) and recall period nonadherence (31% and 26%) compared with PlwD with low fluctuation (0.010; 17%). Recall period nonadherence was higher in PlwD with improved compared with those with deteriorated health in the diary (37% vs 9%). CONCLUSIONS: Health fluctuations frequently occur in dementia and strongly affect HRQoL assessments. Further research is needed to evaluate if more extended recall periods and multiple, consecutive assessments could capture health fluctuations more appropriately in dementia.

Model-Based Economic Evaluations of Interventions for Dementia: An Updated Systematic Review and Quality Assessment.

BACKGROUND: There has been an increase in model-based economic evaluations of interventions for dementia. The most recent systematic review of economic evaluations for dementia highlighted weaknesses in studies, including lack of justification for model assumptions and data inputs. OBJECTIVE: This study aimed to update the last published systematic review of model-based economic evaluations of interventions for dementia, including Alzheimer's disease, with a focus on any methodological improvements and quality assessment of the studies. METHODS: Systematic searches in eight databases, including PubMed, Cochrane, Embase, CINAHL, PsycINFO, EconLit, international HTA database, and the Tufts Cost-Effectiveness Analysis Registry were undertaken from February 2018 until August 2022. The quality of the included studies was assessed using the Philips checklist and the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) 2022 checklist. The findings were summarized through narrative analysis. RESULTS: This review included 23 studies, comprising cost-utility analyses (87%), cost-benefit analyses (9%) and cost-effectiveness analyses (4%). The studies covered various interventions, including pharmacological (n = 10, 43%), non-pharmacological (n = 4, 17%), prevention (n = 4, 17%), diagnostic (n = 4, 17%) and integrated (n = 1, 4%) [diagnostics-pharmacologic] strategies. Markov transition models were commonly employed (65%), followed by decision trees (13%) and discrete-event simulation (9%). Several interventions from all categories were reported as being cost effective. The quality of reporting was suboptimal for the Methods and Results sections in almost all studies, although the majority of studies adequately addressed the decision problem, scope, and model-type selection in their economic evaluations. Regarding the quality of methodology, only a minority of studies addressed competing theories or clearly explained the rationale for model structure. Furthermore, few studies systematically identified key parameters or assessed data quality, and uncertainty was mostly addressed partially. CONCLUSIONS: This review informs future research and resource allocation by providing insights into model-based economic evaluations for dementia interventions and highlighting areas for improvement.

Examining interrater agreement between self-report and proxy-report responses for the quality of life-aged care consumers (QOL-ACC) instrument.

BACKGROUND: Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report. OBJECTIVES: To assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC). METHODS: A cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores. RESULTS: Sixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective. CONCLUSION: Regardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.

Health service and medication costs associated with common mental disorders and subthreshold symptoms in women: Findings from the Geelong Osteoporosis Study in Australia.

OBJECTIVE: This analysis estimated 2013 annual healthcare costs associated with the common mental disorders of mood and anxiety disorders and psychological symptoms within a representative sample of Australian women. METHODS: Data from the 15-year follow-up of women in the Geelong Osteoporosis Study were linked to 12-month Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data. A Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Non-patient edition identified common mental disorders and the General Health Questionnaire 12 assessed psychological symptoms. Participants were categorised into mutually exclusive groups: (1) common mental disorder (past 12 months), (2) subthreshold (no common mental disorder and General Health Questionnaire 12 score ⩾4) or (3) no common mental disorder and General Health Questionnaire 12 score <4. Two-part and hurdle models estimated differences in service use, and adjusted generalised linear models estimated mean differences in costs between groups. RESULTS: Compared to no common mental disorder, women with common mental disorders utilised more Medicare Benefits Schedule services (mean 26.9 vs 20.0, p < 0.001), had higher total Medicare Benefits Schedule cost ($1889 vs $1305, p < 0.01), received more Pharmaceutical Benefits Scheme prescriptions (35.8 vs 20.6, p < 0.001), had higher total Pharmaceutical Benefits Scheme cost ($1226 vs $740, p < 0.05) and had significantly higher annual out-of-pocket costs for Pharmaceutical Benefits Scheme prescriptions ($249 vs $162, p < 0.001). Compared to no common mental disorder, subthreshold women were less likely to use any Medicare Benefits Schedule service (89.6% vs 97.0%, p < 0.01), but more likely to use mental health services (11.4% vs 2.9%, p < 0.01). The subthreshold group received more Pharmaceutical Benefits Scheme prescriptions (mean 43.3 vs 20.6, p < 0.001) and incurred higher total Pharmaceutical Benefits Scheme cost ($1268 vs $740, p < .05) compared to no common mental disorder. CONCLUSIONS: Common mental disorders and subthreshold psychological symptoms place a substantial economic burden on Australian healthcare services and consumers.

Exploring older people's understanding of the QOL-ACC, a new preference-based quality-of-life measure, for quality assessment and economic evaluation in aged care: the impact of cognitive impairment and dementia.

BACKGROUND: Quality-of-life is an essential outcome for quality assessment and economic evaluation in health and social care. The-Quality-of-Life - Aged Care Consumers (QOL-ACC) is a new preference-based quality-of-life measure, psychometrically validated with older people in aged care. More evidence is needed to inform the self-report reliability of the QOL-ACC in older people with varying levels of cognitive impairment and dementia. METHODS: A think-aloud protocol was developed and applied with older residents. The Mini Mental State Examination (MMSE) was applied to assign participants to no cognitive impairment (NCI - MMSE score ≥ 27) and cognitive impairment (MMCI - MMSE score < 27) subgroups. Three independent raters utilised a Tourangeau survey response model-based framework to identify response issues. Data were compared across cognition subgroups and synthesized using a 'traffic light' grading to classify frequency and type of response issues. Gradings were utilised to assess self-report reliability according to different levels of cognitive impairment. RESULTS: Qualitative data from 44 participants (NCI = 20, MMCI = 24) were included for analysis. Response issues were more evident in the cognitive impairment subgroup than the no cognitive impairment subgroup. All participants who received a 'red' grade had an MMSE score of < 20 and 66% of 'amber' grades occurred in the cognitive impairment subgroup. CONCLUSIONS: The QOL-ACC is able to be completed reliably by older residents with an MMSE score > 17. Future research is needed to assess the generalisability of these findings to other preference-based quality of life instruments and for older people in other care settings including health systems.

The Cost-Effectiveness of a Novel Online Social Therapy to Maintain Treatment Effects From First-Episode Psychosis Services: Results From the Horyzons Randomized Controlled Trial.

BACKGROUND: Digital interventions have potential applications in promoting long-term recovery and improving outcomes in first-episode psychosis (FEP). This study aimed to evaluate the cost-effectiveness of Horyzons, a novel online social therapy to support young people aged 16-27 years following discharge from FEP services, compared with treatment as usual (TAU) from a healthcare sector and a societal perspective. STUDY DESIGN: A cost-effectiveness analysis (CEA), based on the change in social functioning, and a cost-utility analysis (CUA) using quality-adjusted life years were undertaken alongside a randomized controlled trial. Intervention costs were determined from study records; resources used by patients were collected from a resource-use questionnaire and administrative data. Mean costs and outcomes were compared at 18 months and incremental cost-effectiveness ratios were calculated. Uncertainty analysis using bootstrapping and sensitivity analyses was conducted. STUDY RESULTS: The sample included 170 participants: Horyzons intervention group (n = 86) and TAU (n = 84). Total costs were significantly lower in the Horyzons group compared with TAU from both the healthcare sector (-AU$4789.59; P < .001) and the societal perspective (-AU$5131.14; P < .001). In the CEA, Horyzons was dominant, meaning it was less costly and resulted in better social functioning. In the CUA, the Horyzons intervention resulted in fewer costs but also yielded fewer QALYs. However, group differences in outcomes were not statistically significant. When young people engaged more with the platform, costs were shown to decrease and outcomes improved. CONCLUSIONS: The Horyzons intervention offers a cost-effective approach for improving social functioning in young people with FEP after discharge from early intervention services.

Recommendations for Emerging Good Practice and Future Research in Relation to Family and Caregiver Health Spillovers in Health Economic Evaluations: A Report of the SHEER Task Force.

BACKGROUND: Omission of family and caregiver health spillovers from the economic evaluation of healthcare interventions remains common practice. When reported, a high degree of methodological inconsistency in incorporating spillovers has been observed. AIM: To promote emerging good practice, this paper from the Spillovers in Health Economic Evaluation and Research (SHEER) task force aims to provide guidance on the incorporation of family and caregiver health spillovers in cost-effectiveness and cost-utility analysis. SHEER also seeks to inform the basis for a spillover research agenda and future practice. METHODS: A modified nominal group technique was used to reach consensus on a set of recommendations, representative of the views of participating subject-matter experts. Through the structured discussions of the group, as well as on the basis of evidence identified during a review process, recommendations were proposed and voted upon, with voting being held over two rounds. RESULTS: This report describes 11 consensus recommendations for emerging good practice. SHEER advocates for the incorporation of health spillovers into analyses conducted from a healthcare/health payer perspective, and more generally inclusive perspectives such as a societal perspective. Where possible, spillovers related to displaced/foregone activities should be considered, as should the distributional consequences of inclusion. Time horizons ought to be sufficient to capture all relevant impacts. Currently, the collection of primary spillover data is preferred and clear justification should be provided when using secondary data. Transparency and consistency when reporting on the incorporation of health spillovers are crucial. In addition, given that the evidence base relating to health spillovers remains limited and requires much development, 12 avenues for future research are proposed. CONCLUSIONS: Consideration of health spillovers in economic evaluations has been called for by researchers and policymakers alike. Accordingly, it is hoped that the consensus recommendations of SHEER will motivate more widespread incorporation of health spillovers into analyses. The developing nature of spillover research necessitates that this guidance be viewed as an initial roadmap, rather than a strict checklist. Moreover, there is a need for balance between consistency in approach, where valuable in a decision making context, and variation in application, to reflect differing decision maker perspectives and to support innovation.

Economic evidence for prevention and treatment of eating disorders: An updated systematic review.

OBJECTIVE: This systematic review updates an existing review examining the cost-effectiveness of interventions to prevent and treat eating disorders (EDs). METHOD: Literature search was conducted in Academic Search Complete, MEDLINE, CINAHL, PsycINFO, EconLit, Global Health, ERIC, Health Business Elite, and Health Policy Reference Center electronic databases, capturing studies published between March 2017 to April 2023. Hand-searching was conducted as supplementary including gray literature search. Included articles were (1) full economic evaluations or return-on-investment studies, (2) in English and (3) aimed at prevention and treatment of any ED. Included studies were added and synthesized with previously reviewed studies. Screening and extraction followed PRISMA guidelines. Quality assessment was conducted using the Drummond checklist. PROSPERO registration CRD42021287464. RESULTS: A total of 28 studies were identified, including 15 published after the previous review. There were nine prevention, seven anorexia nervosa (AN) treatment, five bulimia nervosa (BN) treatment, four binge-eating disorder (BED), and three non-specific ED treatment studies. Findings indicate value-for-money evidence supporting all interventions. Quality assessment showed studies were fair-to-good quality. DISCUSSION: There has been significant growth in cost-effectiveness studies over the last 5 years. Findings suggest that interventions to prevent and treat ED offer value for money. Interventions such as Featback (ED prevention and non-specific ED treatment); focal psychodynamic therapy, enhanced cognitive behavioral therapy, and high-calorie refeeding (AN treatment); stepped-care with assisted self-help and internet-based cognitive behavioral therapy (BN treatment); and cognitive behavioral therapy guided self-help intervention (BED treatment) have good quality economic evidence. Further research in implementation of interventions is required. PUBLIC SIGNIFICANCE STATEMENT: The increasing prevalence of ED globally has significant impact on healthcare systems, families, and society. This review is showcasing the value for money of interventions of eating disorders prevention and treatment. This review found that existing interventions offers positive economic benefit for the healthcare system.

OBJETIVO: Esta revisión sistemática actualiza una revisión existente que examina la rentabilidad de las intervenciones para prevenir y tratar los trastornos de la conducta alimentaria (TCA). MÉTODO: Se realizó una búsqueda bibliográfica en las bases de datos electrónicas Academic Search Complete, MEDLINE, CINAHL, PsycINFO, EconLit, Global Health, ERIC, Health Business Elite y Health Policy Reference Center, abarcando estudios publicados entre marzo de 2017 y abril de 2023. Se realizó una búsqueda manual como complemento, incluyendo la búsqueda de literatura gris. Los artículos incluidos eran (1) evaluaciones económicas completas o estudios de retorno de inversión, (2) en inglés y (3) dirigidos a la prevención y tratamiento de cualquier TCA. Los estudios incluidos se añadieron y sintetizaron con estudios previamente revisados. El cribado y la extracción siguieron las pautas PRISMA. La evaluación de la calidad se realizó utilizando la lista de verificación de Drummond. Registro en PROSPERO CRD42021287464. RESULTADOS: Se identificaron 28 estudios, incluyendo 15 publicados después de la revisión anterior. Hubo nueve estudios de prevención, siete de tratamiento de anorexia nerviosa (AN), cinco de tratamiento de bulimia nerviosa (BN), cuatro de trastorno por atracón (TpA) y tres de tratamiento de TCA no especificados. Los hallazgos indican evidencia de valor por dinero que respalda todas las intervenciones. La evaluación de la calidad mostró que los estudios eran de calidad aceptable a buena. DISCUSIÓN: Ha habido un crecimiento significativo en los estudios de rentabilidad en los últimos cinco años. Los hallazgos sugieren que las intervenciones para prevenir y tratar los TCA ofrecen valor por dinero. Intervenciones como Featback (prevención de TCA y tratamiento de TCA no específicos); terapia psicodinámica focal, terapia cognitivo-conductual mejorada y rehabilitación nutricional con alto contenido calórico (tratamiento de AN); atención escalonada con autoayuda asistida y terapia cognitivo-conductual en línea (tratamiento de BN); y terapia cognitivo-conductual guiada de autoayuda (tratamiento de TpA) tienen una buena evidencia económica de calidad. Se requiere más investigación en la implementación de intervenciones.

Using EQ-5D for Proxy Assessment of Health-Related Quality of Life in Residential Care Facilities: A Systematic Review of Feasibility and Psychometric Properties.

OBJECTIVES: The accurate assessment of Health-Related Quality of Life (HRQoL) in residents of residential care facilities (RCF) necessitates the use of proxy-reported instruments that possess robust psychometric properties. Generally, these instruments are modified versions of self-reported tools, with adjustments made to pronouns and instructions to better suit the respondent. Among such tools, the EQ-5D has emerged as a prominent instrument for evaluating HRQoL within RCF settings. This review aimed to synthesize evidence on psychometric properties of the proxy version of EQ-5D. DESIGN: Systematic review and meta-analysis. SETTING AND PARTICIPANTS: Residents in RCF. METHODS: An extensive search was conducted across 8 databases, covering articles from inception to May 29, 2023. We included a total of 20 articles reporting data that can be used to evaluate psychometric properties of this instrument in RCF. The quality appraisal employed the COSMIN Risk of Bias checklist, and data synthesis followed COSMIN methodology. RESULTS: Most of the included studies were conducted in Europe, with 75% using nursing staff as proxies. Missing data rates were 5% for EQ-5D and 26% for EQ VAS. Evidence of moderate certainty on construct validity of the EQ-5D index was inconsistent, although the EQ VAS showed sufficient construct validity supported by high certainty. EQ-5D index responsiveness evidence was limited, characterized by low certainty and inconsistency. Proxy-resident agreement ranged from poor to moderate, and improved with repeated administration for the "mobility" and "usual activities" dimensions. The lowest agreement was observed when staff served as proxies or the proxy-proxy perspective was adopted. CONCLUSIONS AND IMPLICATIONS: This review offers an overview of the psychometric properties of EQ-5D as a proxy HRQoL measure in RCF. The suboptimal evidence on psychometric properties of EQ-5D indicated the need for more validation studies and cautious use of the instrument in RCF.

An Intersectional Approach to Quantifying the Impact of Geographic Remoteness and Health Disparities on Quality-Adjusted Life Expectancy: Application to Australia.

OBJECTIVES: An intersectional multilevel analysis of individual heterogeneity and discriminatory accuracy (MAIHDA) is a novel method for exploring the interaction between sociodemographic characteristics that affect health outcomes. This study explores the interaction between geographic remoteness and socioeconomic status on health outcomes in Australia from an intersectional perspective. METHODS: Data from a cross-sectional survey were matched with data from the Australian Bureau of Statistics and the Australian Institute of Health and Welfare. To explore the effect of health-related quality of life on life expectancy, quality-adjusted life expectancy (QALE) was estimated through applying utility values derived from the EQ-5D-5L to life table data from the Australian Bureau of Statistics. The effect of geographic remoteness on QALE was quantified using multivariable linear regression. An intersectional MAIHDA was performed to explore differences in mean QALE across strata formed by intersections of age, sex, and Socioeconomic Indexes for Areas score. RESULTS: Based on multivariable linear modeling, QALE declined significantly with increasing remoteness (inner regional, -1.0 years [undiscounted]; remote/very remote, -3.3 years [undiscounted]) (P < .001). In contrast, life expectancy was only significantly different between participants in remote/very remote areas and major cities (ß-coefficient, -2.4; 95% CI -4.4 to -0.4; P = .016). No intersectional interaction effects between strata on QALE were found in the MAIHDA. CONCLUSIONS: QALE has considerable value as a metric for exploring disparities in health outcomes. Given that no intersectional interactions were identified, our findings support broad interventions that target the underlying social determinants of health appropriately reduce disparities versus interventions targeting intersectional interactions.

How do older adults receiving aged care services understand and respond to the EQ-5D-5L? A think-aloud study in residential care.

PURPOSE: The EQ-5D-5L is a preference-based instrument for measuring and valuing health-related quality of life (HRQoL). The EQ-5D-5L has been used extensively in economic evaluation, including in aged care. However, older adults' understanding of the EQ-5D-5L has not been comprehensively investigated to date. This research aimed to assess older adults' understanding of the EQ-5D-5L using a think-aloud protocol with two cognition groups: no cognitive impairment and mild/moderate cognitive impairment. METHODS: Participants' cognition was assessed using the Standardised Mini-Mental State Examination (SMMSE). Face-to face interviews were conducted with concurrent and retrospective think-aloud encouraged through verbal probing. Audio recordings were transcribed, and qualitative analysis, informed by the Tourangeau four-stage Response Model (comprehension, retrieval, decision process, response process) was conducted in NVivo. RESULTS: In total, 46 older adults (age 65 +) were recruited from 10 residential care facilities across South Australia (n = 25 no cognitive impairment, n = 21 mild/moderate cognitive impairment). Comprehension, retrieval, judgement and response mapping issues were common across all cognition levels and EQ-5D-5L dimensions. The two dimensions resulting in the most response issues were usual activities and personal care. CONCLUSION: Older adults may bring a different understanding to the EQ-5D-5L descriptive system than that expected given testing with general population samples. Dimension descriptors that are more relevant to this population may facilitate responses that better align with the underlying EQ-5D-5L concept model.

A systematic review of health state utility values and psychometric performance of generic preference-based instruments for children and adolescents with mental health problems.

AIMS: This paper aims to systematically identify reported health state utility values (HSUVs) in children and adolescents with mental health problems (MHPs) aged less than 25 years; to summarise the techniques used to elicit HSUVs; and to examine the psychometric performance of the identified multi-attribute utility instruments (MAUIs) used in this space. METHODS: A systematic review was conducted following PRISMA guidelines. Peer-reviewed studies published in English, reporting HSUVs for children and adolescents with MHPs using direct or indirect valuation methods were searched in six databases. RESULTS: We found 38 studies reporting HSUVs for 12 types of MHPs across 12 countries between 2005 and October 2021. Attention deficit hyperactivity disorder (ADHD) and depression are the most explored MHPs. Disruptive Behaviour Disorder was associated with the lowest reported HSUVs of 0.06 while cannabis use disorder was associated with the highest HSUVs of 0.88. Indirect valuation method through the use of MAUIs (95% of included studies) was the most frequently used approach, while direct valuation methods (Standard Gamble, Time Trade-Off) were only used to derive HSUVs in ADHD. This review found limited evidence of the psychometric performance of MAUIs used in children and adolescents with MHPs. CONCLUSION: This review provides an overview of HSUVs of various MHPs, the current practice to generate HSUVs, and the psychometric performance of MAUIs used in children and adolescents with MHPs. It highlights the need for more rigorous and extensive psychometric assessments to produce evidence on the suitability of MAUIs used in this area.

Fluctuations of health states in dementia diseases and their impact on the assessment of health today using the EQ-5D-5L: Protocol of a mixed-methods study.

Introduction: The EQ-5D is a widely used health-related quality of life (HRQoL) instrument. The recall period "today" may miss out on recurrent health fluctuations often observed in people with dementia (PlwD). Thus, this study aims to assess the frequency of health fluctuations, affected HRQoL dimensions and the impact of the health fluctuations on the assessment of health today using the EQ-5D-5L. Methods and analysis: This mixed-methods study will base on n=50 patient and caregiver dyads and four main study phases: (1) Baseline assessment of patients' socio-demographic and clinical characteristics; (2) caregivers self-completion of a daily diary for 14 days, documenting patient's today's health compared to yesterday, the affected HRQoL dimensions, and events that could have caused the fluctuations; (3) administration of the EQ-5D-5L as self- and proxy-rating at baseline, day seven and day 14; (4) interviewing caregivers on patient's health fluctuation, the consideration of past fluctuations in the assessment of health today using the EQ-5D-5L, and the appropriateness of recall periods to capture health fluctuations on day 14. Qualitative semi-structured interview data will be analyzed thematically. Quantitative analyses will be used to describe the frequency and intensity of health fluctuations, affected dimensions, and the association between health fluctuation and its consideration in the assessment of health today. Discussion: This study aims to reveal insights into the health fluctuation in dementia, the affected dimensions, and underlying health events, as well as whether individuals adhere to the recall period of health today using the EQ-5D-5L. This study will also provide information about more appropriate recall periods that could better capture health fluctuations. Trial registration: This study is registered in the German Clinical Trials Register (DRKS00027956).

Cost Effectiveness of Pharmacological and Non-pharmacological Treatments for Depression in Low- and Middle-Income Countries: A Systematic Literature Review.

BACKGROUND: Various treatment approaches are available for depression. Given the scarcity of healthcare resources, it is important to optimise treatment availability in an efficient manner. Economic evaluations can inform the optimal allocation of healthcare resources. However, there is currently no review synthesising what is known about the cost effectiveness of treatments for depression in low- and middle-income countries (LMICs). METHODS: This review identified articles from six database searches: APA PsycINFO, CINAHL Complete, Cochrane Library, EconLit, Embase and MEDLINE Complete. Trial- and model-based economic evaluations published between 1 January 2000 and 3 December 2022 were included. The quality of health economic studies (QHES) instrument was used to assess the quality of the included papers. RESULTS: This review comprised 22 articles, with most studies (N = 17) focusing exclusively on the adult population. Even though evidence regarding the cost effectiveness of antidepressants for treating various forms of depression was inconsistent; an atypical antipsychotic (aripiprazole) was frequently reported to be cost effective for treatment-resistant depression. Task shifting (aka task sharing) to lay health workers or non-specialist health care providers appeared to be a cost-effective approach for treating depression in LMICs. CONCLUSIONS: Overall, this review found mixed evidence on the cost effectiveness of depression treatment choices among LMICs, with some indication that task sharing with lay health workers may be cost effective. Future research will be needed to fill the gaps around the cost effectiveness of depression treatments in younger people and beyond healthcare facilities.

Assessment of Quality of Life of Transgender and Gender-Diverse Children and Adolescents in Melbourne, Australia, 2017-2020.

Importance: Transgender and gender-diverse (TGD) children and adolescents may experience not only gender dysphoria but also depression and anxiety, all of which are likely to be associated with reduced quality of life (QOL). Despite this, little is known about QOL in this population. Objectives: To identify demographic, social, and clinical characteristics associated with reduced QOL in TGD children and adolescents; compare their QOL with age-matched population-based norms and that of young people with common mental health problems; and evaluate the association between gender dysphoria and QOL. Design, Setting, and Participants: In this cohort study, baseline data were derived from questionnaires completed in a prospective cohort study (Trans20) of TGD children aged 6 to 12 years and adolescents aged 13 to 17 years first seen at the Royal Children's Hospital Gender Service (Melbourne, Australia) between February 2017 and February 2020. Main Outcomes and Measures: The main outcome was QOL, measured using the Child Health Utility 9D instrument (CHU-9D). Data collection included demographic information, social factors (eg, bullying, lack of support, and social transition), and clinical characteristics (eg, gender identity, gender dysphoria, and mental health difficulties). Population norms and CHU-9D data for Australian youths with mental health diagnoses were derived from published literature. Results: The TGD cohort comprised 525 children and adolescents aged 6 to 17 years (median age, 14 years [IQR, 12-16 years]; 364 [69.33%] presumed female at birth). The mean (SD) CHU-9D score was 0.46 (0.26). Compared with population norms, TGD children (0.58 [0.27] vs 0.81 [0.16]; P < .001) and adolescents (0.41 [0.25] vs 0.80 [0.14]; P < .001) had significantly lower scores. Within the TGD cohort, mean (SD) scores were significantly lower in adolescents (0.41 [0.24] vs 0.62 [0.25]; P < .001), those assigned female at birth (0.43 [0.26] vs 0.55 [0.25]; P < .001), those reporting mental health problems (0.37 [0.23] vs 0.57 [0.25]; P < .001) and physical health problems (0.41 [0.26] vs 0.48 [0.26]; P = .04), and those who were bullied (0.38 [0.24] vs 0.52 [0.25]; P < .001). Gender dysphoria alone was associated with a lower mean (SD) CHU-9D score (0.51 [0.23]) than that in control adolescents with serious mental health conditions such as depression (0.64 [0.26]) and anxiety (0.70 [0.24]) and was an independent factor associated with QOL. Conclusions and Relevance: In this cohort study of TGD children and adolescents in Australia, QOL was worse in this population than in age-matched, population-based peers. Quality of life associated with gender dysphoria was substantially worse than that seen in young people with common mental health conditions. These findings emphasize the risk of poor QOL among TGD young people and the need to better support them.

Digital smartphone intervention to recognise and manage early warning signs in schizophrenia to prevent relapse: the EMPOWER feasibility cluster RCT.

BACKGROUND: Relapse is a major determinant of outcome for people with a diagnosis of schizophrenia. Early warning signs frequently precede relapse. A recent Cochrane Review found low-quality evidence to suggest a positive effect of early warning signs interventions on hospitalisation and relapse. OBJECTIVE: How feasible is a study to investigate the clinical effectiveness and cost-effectiveness of a digital intervention to recognise and promptly manage early warning signs of relapse in schizophrenia with the aim of preventing relapse? DESIGN: A multicentre, two-arm, parallel-group cluster randomised controlled trial involving eight community mental health services, with 12-month follow-up. SETTINGS: Glasgow, UK, and Melbourne, Australia. PARTICIPANTS: Service users were aged > 16 years and had a schizophrenia spectrum disorder with evidence of a relapse within the previous 2 years. Carers were eligible for inclusion if they were nominated by an eligible service user. INTERVENTIONS: The Early signs Monitoring to Prevent relapse in psychosis and prOmote Wellbeing, Engagement, and Recovery (EMPOWER) intervention was designed to enable participants to monitor changes in their well-being daily using a mobile phone, blended with peer support. Clinical triage of changes in well-being that were suggestive of early signs of relapse was enabled through an algorithm that triggered a check-in prompt that informed a relapse prevention pathway, if warranted. MAIN OUTCOME MEASURES: The main outcomes were feasibility of the trial and feasibility, acceptability and usability of the intervention, as well as safety and performance. Candidate co-primary outcomes were relapse and fear of relapse. RESULTS: We recruited 86 service users, of whom 73 were randomised (42 to EMPOWER and 31 to treatment as usual). Primary outcome data were collected for 84% of participants at 12 months. Feasibility data for people using the smartphone application (app) suggested that the app was easy to use and had a positive impact on motivations and intentions in relation to mental health. Actual app usage was high, with 91% of users who completed the baseline period meeting our a priori criterion of acceptable engagement (> 33%). The median time to discontinuation of > 33% app usage was 32 weeks (95% confidence interval 14 weeks to ∞). There were 8 out of 33 (24%) relapses in the EMPOWER arm and 13 out of 28 (46%) in the treatment-as-usual arm. Fewer participants in the EMPOWER arm had a relapse (relative risk 0.50, 95% confidence interval 0.26 to 0.98), and time to first relapse (hazard ratio 0.32, 95% confidence interval 0.14 to 0.74) was longer in the EMPOWER arm than in the treatment-as-usual group. At 12 months, EMPOWER participants were less fearful of having a relapse than those in the treatment-as-usual arm (mean difference -4.29, 95% confidence interval -7.29 to -1.28). EMPOWER was more costly and more effective, resulting in an incremental cost-effectiveness ratio of £3041. This incremental cost-effectiveness ratio would be considered cost-effective when using the National Institute for Health and Care Excellence threshold of £20,000 per quality-adjusted life-year gained. LIMITATIONS: This was a feasibility study and the outcomes detected cannot be taken as evidence of efficacy or effectiveness. CONCLUSIONS: A trial of digital technology to monitor early warning signs that blended with peer support and clinical triage to detect and prevent relapse is feasible. FUTURE WORK: A main trial with a sample size of 500 (assuming 90% power and 20% dropout) would detect a clinically meaningful reduction in relapse (relative risk 0.7) and improvement in other variables (effect sizes 0.3-0.4). TRIAL REGISTRATION: This trial is registered as ISRCTN99559262. FUNDING: This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 27. See the NIHR Journals Library website for further project information. Funding in Australia was provided by the National Health and Medical Research Council (APP1095879).

WHAT WAS THE PROBLEM?: Relapse is a considerable problem for people with a diagnosis of schizophrenia. Relapse can be predicted by early warning signs that are unique to the person. They include withdrawal, fear and paranoia. WHAT WAS THE QUESTION?: Is it possible to investigate the effectiveness of an intervention to recognise and promptly manage early warning signs of relapse in schizophrenia with the aim of preventing relapse? WHAT DID WE DO?: We spoke with 88 mental health staff, 40 carers and 21 service users before we designed a system that used a mobile phone to help people monitor early warning signs. We included peer support to help people using the system reflect on their experiences. We hoped the overall system, called EMPOWER, would help people to be more in charge of their mental health. After consenting 86 people to the study, we were able to randomly assign 73 people either to use the EMPOWER system (42 people) or to receive their normal treatment alone (31 people). We used research measures over 1 year to help us better understand people's experiences. We also involved carers (for example family or friends) and mental health service providers in the research. WHAT DID WE FIND?: We found that it was possible to recruit people to the study and to gather research data. We also found that people used the EMPOWER system and found it acceptable. We found that those who used EMPOWER had a lower rate of relapse over 12 months than people who did not. They were also less likely to be fearful of relapse. We found that EMPOWER was likely to be cost-effective. WHAT DOES THIS MEAN?: This means that a study to investigate the effectiveness of a system to recognise and respond to early warning signs of relapse in schizophrenia is possible.