Further Evidence of Feasibility, Validity, and Reliability of Quality of Life-Aged Care Consumers: Evidence From Home-Based Care Settings.

OBJECTIVES: The Quality of Life-Aged Care Consumers (QOL-ACC) is an aged-care-specific preference-based instrument currently being rolled out in residential care across Australia as part of the aged care Quality Indicator program. This study aimed to provide a comprehensive assessment of the feasibility, reliability, and construct validity of the QOL-ACC in a large national sample of older adults receiving aged care services at home. METHODS: Older adults receiving in-home aged care services completed a survey including the QOL-ACC, Quality of Care Experience-ACC, adult social care outcome tool, EQ-5D-5L, and 2 global single item measures of health and quality of life. Feasibility was assessed by missing responses (≤5%) and ceiling/floor effects (≤15%). Construct validity was assessed by exploring the relationship between the QOL-ACC and other instruments (convergent validity) and its ability to discriminate varying levels of self-rated health and quality of life (known-group validity). RESULTS: A total of 802 respondents (mean age, 74.5 ± 6.3 years; 56.0% females) completed the survey. The QOL-ACC had no missing responses, no floor effects, and very low ceiling effect (3.5%) and demonstrated moderate correlation with adult social care outcome tool (r = 0.59, P < .001), EQ-5D-5L (r = 0.65, P < .001), EQ-VAS (r = 0.53, P < .001), and a lower correlation with the QCE-ACC (r = 0.41, P < .001). Respondents with poor self-rated health and quality of life had significantly lower preference-weighted scores on the QOL-ACC. CONCLUSIONS: The QOL-ACC demonstrated adequate feasibility, reliability, and construct validity in a large population of older people accessing government-subsidized aged care services at home. Further studies will explore the responsiveness of the QOL-ACC to aged-care-specific interventions both in home and residential aged care settings.

Reliability of the quality of life-aged care consumers (QOL-ACC) and EQ-5D-5L among older people using aged care services at home.

PURPOSE: The Quality of Life-Aged Care Consumers (QOL-ACC), a valid preference-based instrument, has been rolled out in Australia as part of the National Quality Indicator (QI) program since April 2023 to monitor and benchmark the quality of life of aged care recipients. As the QOL-ACC is being used to collect quality of life data longitudinally as one of the key aged care QI indicators, it is imperative to establish the reliability of the QOL-ACC in aged care settings. Therefore, we aimed to assess the reliability of the QOL-ACC and compare its performance with the EQ-5D-5L. METHODS: Home care recipients completed a survey including the QOL-ACC, EQ-5D-5L and two global items for health and quality of life at baseline (T1) and 2 weeks later (T2). Using T1 and T2 data, the Gwet's AC2 and intra-class correlation coefficient (ICC) were estimated for the dimension levels and overall scores agreements respectively. The standard error of measurement (SEM) and the smallest detectable change (SDC) were also calculated. Sensitivity analyses were conducted for respondents who did not change their response to global item of quality of life and health between T1 and T2. RESULTS: Of the 83 respondents who completed T1 and T2 surveys, 78 respondents (mean ± SD age, 73.6 ± 5.3 years; 56.4% females) reported either no or one level change in their health and/or quality of life between T1 and T2. Gwet's AC2 ranged from 0.46 to 0.63 for the QOL-ACC dimensions which were comparable to the EQ-5D-5L dimensions (Gwet's AC2 ranged from 0.52 to 0.77). The ICC for the QOL-ACC (0.85; 95% CI, 0.77-0.90) was comparable to the EQ-5D-5L (0.83; 95% CI, 0.74-0.88). The SEM for the QOL-ACC (0.08) was slightly smaller than for the EQ-5D-5L (0.11). The SDC for the QOL-ACC and the EQ-5D-5L for individual subjects were 0.22 and 0.30 respectively. Sensitivity analyses stratified by quality of life and health status confirmed the base case results. CONCLUSIONS: The QOL-ACC demonstrated a good test-retest reliability similar to the EQ-5D-5L, supporting its repeated use in aged care settings. Further studies will provide evidence of responsiveness of the QOL-ACC to aged care-specific interventions in aged care settings.

Health-related quality of life and subjective well-being among children aged 9-12 years in Shandong Province, China.

PURPOSE: To investigate the health-related quality of life (HRQoL) and subjective well-being (SWB) of children aged 9-12 years in eastern China, and examine concordance within child self-reported and parent proxy-assessed. METHODS: Data was collected from 9 to 12 years old children (including their parents) in Shandong Province in 2018. Participants self-completed a hard-copy questionnaire including Child Health Utility 9D (CHU9D), Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL™), Student's Life Satisfaction Scale (SLSS), as well as information on socio-demographic characteristics and self-report health status. Spearman's correlation coefficients and the difference between sub-groups were conducted to assess and compare the agreement on HRQoL and SWB instruments. Exploratory factor analysis (EFA) was used to ascertain the number of unique underlying latent factors that were associated with the items covered by the two generic HRQoL and the SWB instruments. The concordance of child self-reported and parent proxy-assessed was analyzed using weighted kappa coefficient and Bland-Altman plots. RESULTS: A total of 810 children and 810 parents were invited to participate in the survey. A valid sample of 799 (98.6%) children and 643 (79.4%) parents completed the questionnaire. The child self-reported mean scores were CHU9D = 0.87, PedsQL™ = 83.47, and SLSS = 30.90, respectively. The parent proxy-assessed mean scores were PedsQL™ = 68.61 and SLSS = 31.23, respectively. The child self-reported PedsQL™ was moderately correlated with the CHU9D (r = 0.52). There was a weak correlation between CHU9D and SLSS (r = 0.27). The EFA result found 3 factors whilst seven SLSS items grouped into a standalone factor (factor 3), and the nine dimensions of CHU9D shared two common factors with the PedsQL™ (factor 1 and factor 2). A low level of concordance was observed across all comparisons and in all domains (weighted kappa < 0.20) between parents and their children. Furthermore, a high level of discordance was observed between child self-reported and father proxy-assessed. CONCLUSIONS: CHU9D and PedsQL™ instruments have a higher agreement in measuring the HRQoL in children. CHU9D/PedsQL™ and SLSS instruments showed a low agreement and EFA result suggested that measuring SWB in children potentially may provide further information, which might be overlooked by using HRQoL instruments exclusively. Concordance of child self-reported and parent proxy-assessed was poor. Overall, mother-child concordance was higher than father-child concordance.

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.

One and the same or different? An empirical comparison of aged care recipient and non-aged care recipient preferences for quality of aged care amongst older Australians.

The Quality of Care Experience Aged Care Consumers (QCE-ACC) is a new preference-based instrument recently adopted by the Australian government nationally as a new quality indicator for aged care. This study employed a discrete choice experiment (DCE) approach to develop an aged care user-specific value set for the QCE-ACC instrument. This is crucial for establishing the relative importance of key QCE-ACC dimensions for informing quality assessment and economic evaluation in aged care. We further empirically compared the preferences of aged care recipients and non-aged care recipients amongst the older Australian population (65 years and above) for quality of care experience using the QCE-ACC. A total of 201 older people (age 74.2 ± 6.2; 59.7% female) receiving aged care services completed the DCE survey between August and September 2022. The comparison of relative importance indicated some divergence in the preferences between the aged care recipients and non-aged care recipients. Amongst aged care recipients, being treated with "Respect & Dignity" was the most important quality of care experience defining dimension, with "Health & Wellbeing" ranked second and "Skills & Training" (of staff) ranked third. However, within non-aged care recipients, "Skills Training" (of staff) was considered the most important quality of care dimension. Distinction in the QCE-ACC utility weights distributions and mean values were also observed, suggesting that aged care recipients may have different opinions about the quality of aged care compared to those who have not accessed aged care services. The findings shed light on the unique preferences of aged care recipients, indicating that aged care recipients and non-aged care recipients' preferences for quality of aged care are not interchangeable. The value set developed in this study is specifically tailored for assessing the quality of aged care using the QCE-ACC instrument from the perspective of aged care users in Australia.

Are quality of care instruments inclusive of older people living with dementia? A scoping review in long-term care settings.

More than half of older people in long-term care facilities have dementia. Little is currently known about the methods and instruments which can be used to capture the perspectives of older people, including those with dementia, regarding the quality of care provided in such facilities. The main aims of this scoping review were two-fold. Firstly, to identify quality of care instruments that have been applied in long-term care settings. Secondly, to evaluate how these instruments have been developed and validated, particularly in terms of their applicability among older people with dementia. Seven databases (Medline, Web of Science, Scopus, ProQuest, Ageline, CINHAL and google scholar) were searched for relevant literature without any date limit. We used quality criteria adapted from COSMIN (Consensus-based Standards for the selection of health status Measurement Instruments) guidelines to assess the psychometric properties of the instruments. The search identified 16 quality of care instruments which had been used in long-term care settings. Of which, two (12.5%) were specifically designed for older people with dementia, and three instruments (18.7%) were modified for use with older people with mild to moderate dementia. A variety of methods were used to develop the identified instruments including literature reviews, qualitative interviews, expert panel reviews, pre-testing and piloting with older people. None of the identified instruments had been subjected to comprehensive psychometric assessment. Most instruments for assessing quality of care in long term care settings lack alternative communication techniques tailored to people with dementia. This review highlights the need for more rigorous psychometric testing of existing instruments for assessing quality of care in long-term care settings. Several existing measures show promise and may be taken forward for further testing and development for widespread application with older people, including those living with dementia, in long term care settings.

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.

Variation in direct healthcare costs to health system by residents living in longterm care facilities: a Registry of Senior Australians study.

ObjectiveThis study aimed to examine the national variation in government-subsidised healthcare costs of residents in long-term care facilities (LTCFs) and costs differences by resident and facility characteristics.MethodsA retrospective population-based cohort study was conducted using linked national aged and healthcare data of older people (≥65years) living in 2112 LTCFs in Australia. Individuals' pharmaceutical, out-of-hospital, hospitalisation and emergency presentations direct costs were aggregated from the linked healthcare data. Average annual healthcare costs per resident were estimated using generalised linear models, adjusting for covariates. Cost estimates were compared by resident dementia status and facility characteristics (location, ownership type and size).ResultsOf the 75,142 residents examined, 70% (N=52,142) were women and 53.4% (N=40,137) were living with dementia. The average annual healthcare cost (all costs in $A) was $9233 (95% CI $9150-$9295) per resident, with hospitalisation accounting for 47.2% of the healthcare costs. Residents without dementia had higher healthcare costs ($11,097, 95% CI $10,995-$11,200) compared to those with dementia ($7561, 95% CI $7502-$7620). Residents living in for-profit LTCFs had higher adjusted average overall annual healthcare costs ($11,324, 95% CI $11,185-$11,463) compared to those living in not-for-profit ($11,017, 95% CI $10,895-$11,139) and government ($9731, 95% CI $9365-$10,099) facilities.ConclusionsThe healthcare costs incurred by residents of LTCFs varied by presence of dementia and facility ownership. The variation in costs may be associated with residents' care needs, care models and difference in quality of care across LTCFs. As hospitalisation is the biggest driver of the healthcare costs, strategies to reduce preventable hospitalisations may reduce downstream cost burden to the health system.

An Investigation of Inter-Rater and Intra-Proxy Agreement in Measuring Quality of Life of Children in the Community Using the EQ-5D-Y-3L.

BACKGROUND: Self-reporting of health-related quality of life (HRQoL) in children is not always feasible. To date, proxy perspectives (Proxy versions 1 and 2) using the EQ-5D-Y-3L have not been explored for its impact on agreement with child self-report. Proxy version 1 requires the proxy to consider their own view of the child's HRQoL (proxy-proxy), while with Proxy version 2, the proxy is asked to respond as they believe their child would self-report their HRQoL (proxy-child). This study compared the inter-rater and intra-proxy agreement (overall and dimension level) using the EQ-5D-Y-3L self, proxy-proxy, and proxy-child reports. METHODS: A community-based sample of child (aged 6-12 years) and parent dyads were invited to participate in a semi-structured interview. The child self-completed the EQ-5D-Y-3L independently of the parent who completed the EQ-5D-Y-3L from proxy-proxy and proxy-child perspectives. Agreement was determined using Concordance Correlation Coefficients (CCCs) for the overall (preference-weighted) HRQoL, while agreement at the dimension level was evaluated using Gwet's agreement coefficient (AC1). To assess the differences between the self and the two proxy reports, the Wilcoxon matched-pair signed-rank test was used. RESULTS: This study involved 85 child-parent dyads. The agreement between self and proxy overall HRQoL was low (fair) with both proxy-proxy (CCC = 0.28) and proxy-child (CCC = 0.26) reports. The largest discrepancy in the child-proxy agreement at dimension level with both the proxy versions was observed for 'feeling worried, sad or unhappy'. Within this dimension, the proxy-child perspective resulted in a stronger agreement (AC1 = 0.7, good) with child self-report compared with the traditional proxy-proxy perspective (AC1 = 0.58, moderate). Although the preference-weighted HRQoL was consistent across both the proxy perspectives, a significant difference was observed in the EQ VAS scores (p = 0.02). CONCLUSIONS: This study demonstrates that choice of proxy perspective may have an impact on the problems reported on HRQoL dimensions and EQ VAS scores. However, in this community-based sample of generally healthy children, no significant difference was observed in the inter-rater agreement for child-self and proxy preference-weighted EQ-5D-Y-3L values based on proxy perspectives. While this suggests that preference-weighted data are not sensitive to the choice of perspective, these findings may differ for different HRQoL instruments and for alternative value sets with different properties.

Exploring the Use of Pictorial Approaches in the Development of Paediatric Patient-Reported Outcome Instruments: A Systematic Review.

INTRODUCTION: Children may find self-reporting health-related quality of life (HRQoL) using patient-reported outcome measures (PROMs) presented in text-based formats difficult, particularly younger children and children with developmental delays or chronic illness. In such cases, pictorial PROMs (where pictorial representations are used alongside or to replace text) may offer a valid alternative. AIM: This systematic literature review focused on identifying and describing paediatric PROMs that incorporate pictorial approaches, providing children with more effective means to express their HRQoL. METHODS: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed. Seven electronic databases were searched from inception to 1 March 2022. There were no country restrictions applied to the search; all English-language studies were considered for inclusion in the review. Characteristics and development methods of the identified pictorial PROMs were evaluated against context-specific good practice guidelines published by The Professional Society for Health Economics and Outcomes Research (ISPOR). RESULTS: A total of 22 paediatric pictorial PROMs, comprising 28 unique versions, were identified. These PROMs were predominantly developed in the USA and the UK, targeting children aged 3-18 years. Likert scales with pictorial anchors, particularly happy-sad faces, were commonly used for response options, appearing in 15 (54%) of the PROMs. Various graphic methods, such as happy-sad faces, cartoons, and thermometers, were adapted to specific content domains. These PROMs covered a wide range of domains, including physical and emotional health and social functioning. Emphasis was placed on content validity, including active child participation in developing pictorial elements. Notably, children's participation was sought during the development of the pictorial elements for 13 (46%) of the PROMs. Various development methods were employed, with 43% of paediatric PROMs using literature reviews, 43% using focus groups, and 32% involving expert consultation. Interviews emerged as the primary method, being employed in 61% of the studies. Additionally, three measures specifically addressed cross-cultural considerations. CONCLUSION: Paediatric pictorial PROMs offer child-friendly tools for assessing HRQoL for application with children who find reading and understanding text-based PROMs challenging. There is some evidence that pictorial PROMs facilitate self-report in this population and improve measurement properties compared to text-only PROMs. Further research is needed to develop, validate, and test paediatric pictorial PROMs, with an emphasis on including children from the inception in the co-design process.

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 effects of a facilitator-enabled online multicomponent iSupport for dementia programme: A multicentre randomised controlled trial.

BACKGROUND: Multicomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown. OBJECTIVES: This study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services. DESIGN: A multicentre randomised controlled trial. SETTINGS AND PARTICIPANTS: Participants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022. METHODS: The intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction. RESULTS: In total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = -0.1, 95 % CI: -0.3, -0.03, p = 0.012) than the usual care group at T1. CONCLUSION: The facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia. TRIAL REGISTRATION: This study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853). TWEETABLE ABSTRACT: The facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia.