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.

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.

Systematic Review of the Relative Social Value of Child and Adult Health.

OBJECTIVES: We aimed to synthesise knowledge on the relative social value of child and adult health. METHODS: Quantitative and qualitative studies that evaluated the willingness of the public to prioritise treatments for children over adults were included. A search to September 2023 was undertaken. Completeness of reporting was assessed using a checklist derived from Johnston et al. Findings were tabulated by study type (matching/person trade-off, discrete choice experiment, willingness to pay, opinion survey or qualitative). Evidence in favour of children was considered in total, by length or quality of life, methodology and respondent characteristics. RESULTS: Eighty-eight studies were included; willingness to pay (n = 9), matching/person trade-off (n = 12), discrete choice experiments (n = 29), opinion surveys (n = 22) and qualitative (n = 16), with one study simultaneously included as an opinion survey. From 88 studies, 81 results could be ascertained. Across all studies irrespective of method or other characteristics, 42 findings supported prioritising children, while 12 provided evidence favouring adults in preference to children. The remainder supported equal prioritisation or found diverse or unclear views. Of those studies considering prioritisation within the under 18 years of age group, nine findings favoured older children over younger children (including for life saving interventions), six favoured younger children and five found diverse views. CONCLUSIONS: The balance of evidence suggests the general public favours prioritising children over adults, but this view was not found across all studies. There are research gaps in understanding the public's views on the value of health gains to very young children and the motivation behind the public's views on the value of child relative to adult health gains. CLINICAL TRIAL REGISTRATION: The review is registered at PROSPERO number: CRD42021244593. There were two amendments to the protocol: (1) some additional search terms were added to the search strategy prior to screening to ensure coverage and (2) a more formal quality assessment was added to the process at the data extraction stage. This assessment had not been identified at the protocol writing stage.

Valuing indigenous quality of life: A review of preference-based quality of life instruments and elicitation techniques with global older indigenous populations.

Indigenous perspectives of quality of life (QoL) are different to that of non-Indigenous populations. Determining how to identify and value what is important to QoL for people from diverse cultural backgrounds is crucial for assessing effective outcomes for quality assessment and health economic evaluation to guide evidence-based decision making. This is particularly important for older Indigenous people who have complex care and support needs within health and aged-care systems. This scoping review aims to assess the existing literature in this field by firstly identifying preference based instruments that have been applied with older Indigenous peoples and secondly, exploring the extent to which existing preference based instruments applied with older Indigenous peoples encompass older Indigenous peoples QoL perspectives in their design and application. The inclusion criteria for the review were studies using preference based QoL instruments with an Indigenous population where the cohort was aged 50 years or over. This resulted in the critical analysis of 12 studies. The review identified that preference based QoL instruments have rarely been applied to date with older Indigenous populations with most instruments found to be designed for non-Indigenous adults. Typically, instruments have not incorporated Indigenous worldviews of QoL into either the content of the descriptive system or the elicitation techniques and corresponding value sets generated. To encapsulate Indigenous cultural perspectives accurately in economic evaluation, further research is required as to how QoL domains in preference based instruments for Indigenous peoples can be reflective of Indigenous perspectives. It is imperative that the QoL preferences of older Indigenous peoples are adequately captured within preference based QoL instruments applied with this population.

Child-Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLTM.

OBJECTIVE: This study examined the inter-rater agreement between child-self and parental proxy health-related quality of life (HRQoL) ratings (overall and domain level) using two different generic child-specific measures, the Child Health Utility 9D (CHU9D) and the Pediatric Quality of Life Inventory (PedsQLTM), in a community-based sample of Australian children. A secondary objective was to investigate the impact of age on child-parent agreement across the dimensions of the two measures. METHODS: A total of 85 child-parent dyads (children aged 6-12 years) recruited from the community completed the self and proxy versions of the CHU9D and the PedsQLTM, respectively. The inter-rater agreement was estimated using Concordance Correlation Coefficients (CCC) and Gwet's Agreement Coefficient (AC1) for the overall sample and across age-groups. RESULTS: Agreement was low for overall HRQoL for both the CHU9D (CCC = 0.28) and the PedsQLTM (CCC = 0.39). Across the CHU9D dimensions, agreement was the highest for 'sad' (AC1 = 0.83) and lowest for 'tired' (AC1 = 0.31). The PedsQLTM demonstrated stronger agreement (AC1 = 0.41-0.6) for the physical health dimension but weaker for the psychosocial dimensions (AC1 < 0.4). Except for the 'tired' dimension, agreement was consistent across age-groups with the CHU9D, whilst the PedsQLTM showed poor agreement for most of the psychosocial health items among the older age-groups only (8-10 and 11-12 years). CONCLUSION: This study highlights that the agreement between child and parent proxy reported HRQoL may be influenced by both the measure used and the age of the child. These findings may have implications for the economic evaluation of healthcare interventions and services in child populations when both child and proxy perspectives are considered in the assessment of child HRQoL.

Exploring the role of a facilitator in supporting family carers when embedding the iSupport for Dementia programme in care services: A qualitative study.

AIMS: To explore stakeholders' perceptions of a facilitator's role in supporting carers when embedding iSupport for Dementia psychoeducation program, in care services. METHODS: A qualitative descriptive study design was applied. Data were collected from workshops and interviews with carers of people living with dementia (PLWD)and with health and social care professionals from two tertiary hospitals and two community aged care organisations across three Australian states between October 2021 and March 2022. A thematic analysis was used to analyse data. The COREQ guideline was followed to report our findings. RESULTS: A total of 30 family carers and 45 health and social care professionals participated in the study. Three main themes and seven subthemes were identified from the data. We described the main themes as (1) the facilitator's role at the time of dementia diagnosis, (2) the facilitator's role throughout the everyday dementia care journey and (3) the facilitator's role during transition moments. CONCLUSIONS: Caring for family members with dementia is demanding and stressful for carers. Embedding a facilitator-enabled iSupport for Dementia program in hospital and community aged care settings has the potential to mitigate sources of stress associated with care recipient factors, carer factors and care service factors, and improve the health and well-being of carers and those for whom they care. RELEVANCE TO CLINICAL PRACTICE: Our findings will inform the establishment of iSupport facilitators appointed by dementia care providers in hospital and community care settings and help determine their roles and responsibilities in delivering the iSupport program. Our findings relate to nurse-led and coordinated dementia care in hospital and community aged care settings. PATIENT OR PUBLIC CONTRIBUTION: This study was co-designed with stakeholders from two aged care organisations and two tertiary hospitals. The study participants were staff employed by these organisations and carers of PLWD who were service users.

Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology.

PURPOSE: Increasingly there are calls to routinely assess the health-related quality of life (HRQoL) of older people receiving aged care services, however the high prevalence of dementia and cognitive impairment remains a challenge to implementation. Eye-tracking technology facilitates detailed assessment of engagement and comprehension of visual stimuli, and may be useful in flagging individuals and populations who cannot reliably self-complete HRQoL instruments. The aim of this study was to apply eye-tracking technology to provide insights into self-reporting of HRQoL among older people in residential care with and without cognitive impairment. METHODS: Residents (n = 41), recruited based on one of three cognition subgroups (no, mild, or moderate cognitive impairment), completed the EQ-5D-5L on a computer with eye tracking technology embedded. Number and length of fixations (i.e., eye gaze in seconds) for key components of the EQ-5D-5L descriptive system were calculated. RESULTS: For all dimensions, participants with no cognitive impairment fixated for longer on the Area of Interest (AOI) for the response option they finally chose, relative to those with mild or moderate cognitive impairment. Participants with cognitive impairment followed similar fixation patterns to those without. There was some evidence that participants with cognitive impairment took longer to complete and spent relatively less time attending to the relevant AOIs, but these differences did not reach statistical significance generally. CONCLUSIONS: This exploratory study applying eye tracking technology provides novel insights and evidence of the feasibility of self-reported HRQoL assessments in older people in aged care settings where cognitive impairment and dementia are highly prevalent.

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.

Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature.

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.

Assessing Outcomes for Cost-Utility Analysis in Children and Adolescents With Mental Health Problems: Are Multiattribute Utility Instruments Fit for Purpose?

OBJECTIVES: The objective of this study was to compare the concurrent and construct validity, as well as the sensitivity of 5 multiattribute utility instruments (MAUIs), including the Assessment of Quality of Life-6D (AQoL-6D), EQ-5D-Y, Health Utilities Index (HUI)-2 and HUI-3, and the Child Health Utility 9D, 1 generic pediatric quality of life instrument, with 3 routinely collected outcome measures in Australian mental health services (Strengths and Difficulties Questionnaire, Clinical Global Assessment Scale [CGAS] and the Health of the Nation Outcome Scale for Children and Adolescents) in children and adolescents diagnosed of internalizing (eg, anxiety/depression), externalizing (eg, attention deficit hyperactivity disorder/conduct disorders), and trauma/stress related mental disorders. METHODS: A cross-sectional survey of measures, including demographic and basic treatment information, in children/adolescents recruited via 5 child and youth mental health services in Queensland and Victoria, Australia. Measures were either proxy or self-report completed, the CGAS and the Health of the Nation Outcome Scale for Children and Adolescents were clinician completed. RESULTS: The sample included 426 participants and had a mean age of 13.7 years (range 7-18 years). Utilities (as calculated from MAUIs) were generally lower in older adolescents and those with internalizing disorders. All MAUIs and self-reported clinical measures significantly correlated with each other (absolute correlation range 0.40-0.90), with the AQoL-6D showing generally higher levels of correlations. Correlations between the MAUIs and clinician/proxy-reported measures were weak, regardless of diagnosis (absolute correlation range 0.09-0.47). Generally, EQ-5D-Y, HUI-2, and AQoL-6D were more sensitive than Child Health Utility 9D and HUI-3 when distinguishing between different severities according to clinician-assessed CGAS (effect size range 0.17-0.84). CONCLUSIONS: The study showed that the commonly used MAUIs had good concurrent and construct validity compared with routinely used self-complete measures but poor validity when compared with clinician/proxy-completed measures. These findings generally held across different diagnoses.

Valuing the Quality-of-Life Aged Care Consumers (QOL-ACC) Instrument for Quality Assessment and Economic Evaluation.

OBJECTIVE: This paper reports on the valuation of the classification system for the Quality-of-Life Aged Care Consumers (QOL-ACC) instrument using a discrete choice experiment (DCE) with duration with a large sample of older people receiving aged care services. METHODS: A DCE with 160 choice sets of two quality-of-life state-survival duration combinations blocked into 20 survey versions, with eight choice sets in each version, was designed and administered through an on-line survey to older Australians receiving aged care services in home and via interviewer facilitation with older people in residential aged care settings. Model specifications investigating preferences with respect to survival duration and interactions between QOL-ACC dimension levels were estimated. Utility weights were developed, with estimated coefficients transformed to the 0 (being dead) to 1 (full health) scale to generate a value set suitable for application in quality assessment and for the calculation of quality-adjusted life-years for use in economic evaluation. RESULTS: In total, 953 older people completed the choice experiment with valid responses. The estimation results from econometric model specifications indicated that utility increased with survival duration and decreased according to quality-of-life impairment levels. An Australian value set (range - 0.56 to 1.00) was generated for the calculation of utilities for all QOL-ACC states. CONCLUSION: The QOL-ACC is unique in its focus on measuring and valuing quality of life from the perspective of older people themselves, thereby ensuring that the preferences of aged care service users are the primary focus for quality assessment and economic evaluation.

A Systematic Review of International Guidance for Self-Report and Proxy Completion of Child-Specific Utility Instruments.

OBJECTIVES: This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities. METHODS: A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self- and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized. RESULTS: A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self- and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self- and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self- and proxy completion. CONCLUSIONS: EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self- and proxy reports in assessing HRQoL in child populations.

Preference Elicitation Techniques Used in Valuing Children's Health-Related Quality-of-Life: A Systematic Review.

BACKGROUND AND OBJECTIVES: Valuing children's health states for use in economic evaluations is globally relevant and is of particular relevance in jurisdictions where a cost-utility analysis is the preferred form of analysis for decision making. Despite this, the challenges with valuing child health mean that there are many remaining questions for debate about the approach to elicitation of values. The aim of this paper was to identify and describe the methods used to value children's health states and the specific issues that arise in the use of these methods. METHODS: We conducted a systematic search of electronic databases to identify studies published in English since 1990 that used preference elicitation methods to value child and adolescent (under 18 years of age) health states. Eligibility criteria comprised valuation studies concerning both child-specific patient-reported outcome measures and child health states defined in other ways, and methodological studies of valuation approaches that may or may not have yielded a value set algorithm. RESULTS: A total of 77 eligible studies were identified from which data on country setting, aims, condition (general population or clinically specific), sample size, age of respondents, the perspective that participants were asked to adopt, source of values (respondents who completed the preference elicitation tasks) and methods questions asked were extracted. Extracted data were classified and evaluated using narrative synthesis methods. The studies were classified into three groups: (1) studies comparing elicitation methods (n = 30); (2) studies comparing perspectives (n = 23); and (3) studies where no comparisons were presented (n = 26); selected studies could fall into more than one group. Overall, the studies varied considerably both in methods used and in reporting. The preference elicitation tasks included time trade-off, standard gamble, visual analogue scaling, rating/ranking, discrete choice experiments, best-worst scaling and willingness to pay elicited through a contingent valuation. Perspectives included adults' considering the health states from their own perspective, adults taking the perspective of a child (own, other, hypothetical) and a child/adolescent taking their own or the perspective of another child. There was some evidence that children gave lower values for comparable health states than did adults that adopted their own perspective or adult/parents that adopted the perspective of children. CONCLUSIONS: Differences in reporting limited the conclusions that can be formed about which methods are most suitable for eliciting preferences for children's health and the influence of differing perspectives and values. Difficulties encountered in drawing conclusions from the data (such as lack of consensus and poor reporting making it difficult for users to choose and interpret available values) suggest that reporting guidelines are required to improve the consistency and quality of reporting of studies that value children's health using preference-based techniques.

Do we agree or disagree? A systematic review of the application of preference-based instruments in self and proxy reporting of quality of life in older people.

PURPOSE: Quality of life is an important person-centred outcome in health and aged care settings. Due to an increasing prevalence of cognitive decline and dementia in ageing populations, a proportion of older people receiving health and aged care services may not be able to reliably assess their own quality of life, highlighting the need for proxy assessment. This systematic review sought to investigate the level of agreement between self and proxy-report of older people's quality of life using established preference-based instruments of quality of life suitable for economic evaluation. METHODS: A systematic review was conducted following PRISMA guidelines. Eight databases were searched: Web of Science, Scopus, Medline, Econlit, PsychINFO, CINAHL, Ageline and Cochrane Library. Information was extracted on the instruments, population samples (including any cognitive thresholds applied), mean scores, type of proxy, and measures of inter-rater agreement. RESULTS: A total of 50 studies using eight different preference-based quality of life instruments were identified. Most studies were cross-sectional (72%) with a wide variety of cognitive assessments and thresholds applied to define older participants with cognitive impairment. The most common proxies were family members, mostly spouses. The level of agreement between self and proxy-report was generally poor - irrespective of the instrument applied or type of proxy - with proxy-report generally indicating lower levels of quality of life than self-report. There was some evidence of stronger agreement on more observable quality of life domains e.g., physical health and mobility, relative to less observable domains e.g. emotional well-being. Few studies tracked self and/or proxy-report of quality of life longitudinally. CONCLUSIONS: More research is needed to develop evidence to inform guidance on self-report versus proxy-report of quality of life for older people receiving health and aged care services. Until then, the collection of both self and proxy reports as complementary measures is indicated.

A nurse-led multicentre randomized controlled trial on effectiveness and cost-effectiveness of Chinese iSupport for dementia program: A study protocol.

AIMS: To describe a nurse-led multicentre randomized controlled trial protocol developed to evaluate the effectiveness and cost-effectiveness of a Chinese iSupport for Dementia program in Australia and Greater China including mainland China, Taiwan, Hong Kong and Macau. DESIGN: A multicentre randomized controlled trial following the SPIRIT checklist. METHODS: Participants in the study will be recruited from Australia and Greater China and will be randomly assigned to the intervention group or the usual care group. Interventions will include self-learning of the iSupport program, virtual peer support and nurse program facilitator support for 6 months. Primary outcome measures will be the 12-Item Short-Form Health Survey. Secondary outcome measures will include: Revised Scale for Caregiving Self-efficacy; Quality of Social Support Scale; Revised Memory and Behaviour Problem Checklist; the Quality of Life in Alzheimer's Disease-Proxy; usages of care services; and cost-effectiveness of the intervention. Outcomes will be measured at baseline, 6 months and 9 months from the baseline. Caregivers' experiences of the peer support will be explored. This project was funded by the National Foundation for Australia-China Relations, Australian Government (Project ID: NFACR216). The total amount is $440,000 Australian dollars (or £ 236,231). DISCUSSION: Approximately, 20% of people living with dementia in the world live in Australia and Greater China. Older Chinese are usually cared for by family caregivers at home due to the influence of Confucianism. However, free and online psychoeducation programs for this large cohort of caregivers are not available or accessible. The World Health Organization iSupport for Dementia is an evidence-based online psychoeducation program for caregivers. Implementing a culturally adapted Chinese iSupport program will address this gap in supporting caregivers. IMPACT: This study will provide research evidence on effectiveness and cost-effectiveness of an online psychoeducation program for caregivers. Findings will inform policy and practice development.

Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures.

BACKGROUND AND AIMS: Patient-reported outcome measures (PROMs) for children (aged ≤ 18 years) present methodological challenges. PROMs can be categorised by their diverse underlying conceptual bases, including functional, disability and health (FDH) status; quality of life (QoL); and health-related quality of life (HRQoL). Some PROMs are designed to be accompanied by preference weights. PROMs should account for childhood developmental differences by incorporating age-appropriate health/QoL domains, guidance on respondent type(s) and design. This systematic review aims to identify generic multidimensional childhood PROMs and synthesise their characteristics by conceptual basis, target age, measurement considerations, and the preference-based value sets that accompany them. METHODS: The study protocol was registered in the Prospective Register of Systematic Reviews (CRD42021230833), and reporting followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted systematic database searches for generic multidimensional childhood PROMs covering the period 2012-2020, which we combined with published PROMs identified by an earlier systematic review that covered the period 1992-2011. A second systematic database search identified preference-based value sets for generic multidimensional PROMs. The PROMs were categorised by conceptual basis (FDH status, QoL and HRQoL) and by target age (namely infants and pre-schoolers aged < 5 years, pre-adolescents aged 5-11, adolescents aged 12-18 and multi-age group coverage). Descriptive statistics assessed how PROM characteristics (domain coverage, respondent type and design) varied by conceptual basis and age categories. Involvement of children in PROM development and testing was assessed to understand content validity. Characteristics of value sets available for the childhood generic multidimensional PROMs were identified and compared. RESULTS: We identified 89 PROMs, including 110 versions: 52 FDH, 29 QoL, 12 HRQoL, nine QoL-FDH and eight HRQoL-FDH measures; 20 targeted infants and pre-schoolers, 29 pre-adolescents, 24 adolescents and 37 for multiple age groups. Domain coverage demonstrated development trajectories from observable FDH aspects in infancy through to personal independence and relationships during adolescence. PROMs targeting younger children relied more on informant report, were shorter and had fewer ordinal scale points. One-third of PROMs were developed following qualitative research or surveys with children or parents for concept elicitation. There were 21 preference-based value sets developed by 19 studies of ten generic multidimensional childhood PROMs: seven were based on adolescents' stated preferences, seven were from adults from the perspective of or on behalf of the child, and seven were from adults adopting an adult's perspective. Diverse preference elicitation methods were used to elicit values. Practices with respect to anchoring values on the utility scale also varied considerably. The range and distribution of values reflect these differences, resulting in value sets with notably different properties. CONCLUSION: Identification and categorisation of generic multidimensional childhood PROMs and value sets by this review can aid the development, selection and interpretation of appropriate measures for clinical and population research and cost-effectiveness-based decision-making.

Cost-utility analysis of breast reduction surgery for women with symptomatic breast hypertrophy.

OBJECTIVE: To assess the cost-effectiveness of breast reduction surgery for women with symptomatic breast hypertrophy in Australia. DESIGN: Cost-utility analysis of data from a prospective cohort study. SETTING, PARTICIPANTS: Adult women with symptomatic breast hypertrophy assessed for bilateral breast reduction at the Flinders Medical Centre, a public tertiary hospital in Adelaide, April 2007 - February 2018. The control group included women with breast hypertrophy who had not undergone surgery. MAIN OUTCOME MEASURES: Health care costs (for the surgical admission and other related hospital costs within 12 months of surgery) and SF-6D utility scores (measure of health-related quality of life) were used to calculate incremental costs per quality-adjusted life-year (QALY) gained over 12 months, extrapolated to a 10-year time horizon. RESULTS: Of 251 women who underwent breast reduction, 209 completed the baseline and at least one post-operation assessment (83%; intervention group); 124 of 350 invited women waiting for breast reduction surgery completed the baseline and 12-month assessments (35%; control group). In the intervention group, the mean SF-6D utility score increased from 0.313 (SD, 0.263) at baseline to 0.626 (SD, 0.277) at 12 months; in the control group, it declined from 0.296 (SD, 0.267) to 0.270 (SD, 0.257). The mean QALY gain was consequently greater for the intervention group (adjusted difference, 1.519; 95% CI, 1.362-1.675). The mean hospital cost per patient was $11 857 (SD, $4322), and the incremental cost-effectiveness ratio (ICER) for the intervention was $7808 per QALY gained. The probability of breast reduction surgery being cost-effective was 100% at a willingness-to-pay threshold of $50 000 per QALY and 88% at $28 033 per QALY. CONCLUSIONS: Breast reduction surgery for women with symptomatic breast hypertrophy is cost-effective and should be available to women through the Australian public healthcare system.

Prevalence of Eye Conditions, Utilization of Eye Health Care Services, and Ophthalmic Medications After Entering Residential Aged Care in Australia.

Purpose: This study aims to evaluate the burden and trends of eye diseases, utilisation of eye health care services, and ophthalmic medications among older people living in residential aged care facilities in Australia. Methods: A cross-sectional study was conducted using data from the Registry of Senior Australians. Individuals aged ≥65 years who entered permanent residential aged care facilities between 2008 and 2015 were included. The prevalence (95% confidence interval [CI]) of eye diseases by year, eye health care services, and ophthalmic medication use within a year of entry into the service were evaluated. Poisson regression models estimated adjusted rate of change using prevalence ratio (PR) by age, sex, state, and frailty scores. Results: Of the 409,186 people studied, 43.6% (N = 178,367) had an eye condition. Of the total cohort, 32.9% (N = 134,566) had chronic eye conditions and 19.7% (N = 80,661) had an acute eye condition. Common chronic eye conditions were glaucoma (13.6%, N = 55,830), cataract (8%, (N = 32,779), blindness (4.5%, N = 18,856), and poor vision (10.3%, N = 42,245). Prevalence of any eye condition (2008: 42.7%, 95% CI = 42.2%-43.2% and 2015: 41.2%, 95% CI = 40.8-41.6%, PR = 0.99, 95% CI = 0.99-0.99, P < 0.001), acute eye conditions (2008: 19.8%, 95% CI = 19.4%-20.2% and 2015: 17.4%, 95% CI = 17.1%-17.6%, PR = 0.97, 95% CI = 0.97-0.98, P < 0.001), and blindness (2008: 5.2%, 95% CI = 5.0%-5.4% and 2015: 3.7%, 95% CI = 3.5%-3.9%, PR = 0.93, 95% CI = 0.93-0.94, p < 0.001). decreased over the study period. The prevalence of glaucoma (2008: 13.5%, 95% CI = 13.2%-13.8% and 2015: 13.8%, 95% CI = 13.5%-13.7%; PR = 1.01, 95% CI = 0.99-1.10, P < 0.001) and cataract (2008: 7.4%, 95% CI = 7.2%-7.7% and 2015: 8.5%, 95% CI = 8.3%-8.7%, PR = 1.00, 95% CI = 1.00-1.01, P < 0.001) remained stable or slightly increased. Overall, 46.4% (N = 82,769) of individuals with eye conditions, accessed at least one eye health service within the first year of entering residential care and 70.5% (N = 125,673) used at least one ophthalmic medication. Optometric services (41.7%, N = 74,358) were the most used eye health care services and anti-infective eye drops (37.2%, N = 66,331) were the most commonly dispensed medications. Conclusions: The prevalence of blindness among older Australian using residential aged care services decreased over the study period. However, the burden of eye diseases remained high between 2008 and 2015, whereas the use of eye health care services was disproportionately low. This study provides evidence of a significant need for eye health care services for older people with an eye disease in residential aged care facilities. Translational Relevance: Four in ten long term aged care residents in Australia had at least one eye condition over the study period, indicating potential for a high eye health care needs in aged care settings.

The integration of mixed methods data to develop the quality of life - aged care consumers (QOL-ACC) instrument.

BACKGROUND: This paper describes the collection and integration of mixed methods data to facilitate the final selection of items for the Quality of Life - Aged Care Consumers (QOL-ACC) instrument. The aim of the wider project is to develop a preference-based quality of life instrument that can be used for quality assessment and economic evaluation. Older people have been involved at every stage of the development of the QOL-ACC to ensure that the final instrument captures their perspectives and preferences. METHODS: Mixed methods data was collected on draft items for the QOL-ACC instrument across six key quality of life dimensions (mobility, pain management, emotional well-being, independence, social connections, and activities). Qualitative face validity data was collected from older people (aged 66 to 100 years) living in the community and in residential aged care via semi-structured interviews (n = 59). Quantitative data was collected from older people (aged 65 to 91 years) receiving aged care services in the community via an online survey (n = 313). A traffic light pictorial approach was adopted as a practical and systematic way to categorise and present data in a meaningful way that was easy for non-academic workshop members to understand and to be able to discuss the relative merits of each draft item. RESULTS: The traffic light approach supported the involvement of consumer and aged care provider representatives in the selection of the final items. Six items were selected for the QOL-ACC instrument with one item representing each of the six dimensions. CONCLUSIONS: This methodological approach has ensured that the final instrument is psychometrically robust as well as meaningful, relevant and acceptable to aged care consumers and providers.

Assessing the relative importance of key quality of life dimensions for people with and without a disability: an empirical ranking comparison study.

BACKGROUND: In economic evaluation, the quality of life of people with a disability has traditionally been assessed using preference-based instruments designed to measure and value quality of life. To provide robust measurement of the effectiveness of programs designed to improve the quality of life of people living with a disability, preference-based measures need to be sufficiently sensitive to detect incremental changes in the quality of life dimensions that are most important to people who have a disability. This study sought to explore whether there was a difference in the ranked order of importance of quality of life dimensions between people with a disability and people without a disability. METHODS: An online survey was developed and administered Australia wide. The first sample (n = 410) comprised adults (aged ≥ 18 years) with a disability (n = 208) and family carers of person/s with a disability who were asked to respond on behalf of the person with a disability (n = 202). The second sample included adults without disability (n = 443). Respondents were asked to rank the importance of 12 quality of life dimensions extracted from the content of established preference-based quality of life measures (EQ-5D, AQoL and ASCOT). RESULTS: People with a disability placed relatively higher importance on broader quality of life dimensions (e.g. Control, Independence, Self-care) relative to health status focused dimensions (e.g. Vision, Hearing, Physical mobility). This distinction was less differentiable for those 'without a disability'. The biggest differences in ranked importance of dimensions were in: Vision ('with disability' = 10th, 'without disability' = 4th), Self-care ('with disability' = 3rd, 'without disability' = 7th) and Mental well-being ('with disability' = 6th, 'without disability' = 2nd). CONCLUSIONS: The relative importance of quality of life dimensions for people with a disability differs to people without a disability. Quality of life is a key outcome for economic evaluation and for assessing the impact of disability care policy and practice in Australia and internationally. It is important that the effectiveness of interventions is measured and valued in ways which are fully reflective of the quality of life preferences of people with a disability.