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.

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.

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.

The allied health rural generalist pathway: a cost consequence analysis.

INTRODUCTION: Rural and remote health workforces face longstanding challenges in Australia. Little is known about the economic effectiveness of workforce initiatives to increase recruitment and retention. A two-level allied health rural generalist pathway was introduced as a workforce strategy in regional local health networks (LHNs) in South Australia in 2019. This research measured the resources and outcomes of the pathway following its introduction. METHODS: A multi-phase, mixed-methods study was conducted with a 3-year follow-up period (2019-2022). A cost-consequence analysis was conducted as part of this study. Resources measured included tuition, time for quarantined study, supervision and support, and program manager salary. Outcomes measured included length of tenure, turnover data, career progression, service development time, confidence and competence. RESULTS: Fifteen allied health professional trainees participated in the pathway between 2019 and 2022 and seven completed during this time. Trainees participated for between 3 and 42 months. The average total cost of supporting a level 1 trainee was $34,875 and level 2 was $70,469. The total return on investment within the evaluation period was $317,610 for the level 1 program and $58,680 for the level 2 program. All seven completing trainees continued to work in regional LHNs at the 6-month follow-up phase and confidence and competence to work as a rural generalist increased. CONCLUSION: This research found that the allied health rural generalist pathway has the potential to generate multiple positive outcomes for a relatively small investment and is therefore likely to be a cost-effective workforce initiative.

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.

A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults.

PURPOSE: Self-Reporting using traditional text-based Quality-of-Life (QoL) instruments can be difficult for people living with sensory impairments, communication challenges or changes to their cognitive capacity. Adapted communication techniques, such as Easy-Read techniques, or use of pictures could remove barriers to participation for a wide range of people. This review aimed to identify published studies reporting adapted communication approaches for measuring QoL, the methodology used in their development and validation among adult populations. METHODS: A scoping review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews checklist was undertaken. RESULTS: The initial search strategy identified 13,275 articles for screening, with 264 articles identified for full text review. Of these 243 articles were excluded resulting in 21 studies for inclusion. The majority focused on the development of an instrument (12 studies) or a combination of development with some aspect of validation or psychometric testing (7 studies). Nineteen different instruments were identified by the review, thirteen were developed from previously developed generic or condition-specific quality of life instruments, predominantly aphasia (7 studies) and disability (4 studies). Most modified instruments included adaptations to both the original questions, as well as the response categories. CONCLUSIONS: Studies identified in this scoping review demonstrate that several methods have been successfully applied e.g. with people living with aphasia post-stroke and people living with a disability, which potentially could be adapted for application with more diverse populations. A cohesive and interdisciplinary approach to the development and validation of communication accessible versions of QOL instruments, is needed to support widespread application, thereby reducing reliance on proxy assessors and promoting self-assessment of QOL across multiple consumer groups and sectors.

Study protocol for ELders AT Ease (ELATE): a cluster randomised controlled trial of cognitive behaviour therapy to reduce depressive symptoms in aged care residents.

BACKGROUND: This protocol describes a study of the effectiveness of cognitive behaviour therapy (CBT) for reducing depressive symptoms in older adults living in residential aged care (RAC) facilities in Australia. Depressive symptoms are highly prevalent in this population, yet the benefits of CBT for reducing such symptoms in RAC facilities have not been widely investigated. Elders at Ease (ELATE) is a 16-session CBT intervention designed for implementation in RAC facilities. The intervention includes cognitive, behavioural and reminiscence strategies and is delivered by mental health trainees (MHTs) in collaboration with RAC facility staff and residents' family. METHODS AND ANALYSIS: ELATE will be evaluated using a cluster randomised trial comparing outcomes for residents who participate in the intervention with those living in usual care control facilities. The participants are RAC residents aged 65 years or above, with depressive symptoms (Patient Health Questionnaire-2 ≥ 3) and normal cognition or mild cognitive impairment (Standardised Mini Mental Status Examination ≥ 21). They are assessed at four time points: baseline prior to randomisation (T1), mid-treatment (T2; 2.5 months post randomisation), post-treatment (T3; 5 months post-randomisation) and 3-month follow-up (T4; 8 months post randomisation). The primary outcome is change in depressive symptoms between T1 and T3. Secondary outcomes are depressive symptoms at T4, anxiety, suicide ideation, sleep problems, quality of life, staff and family knowledge of late-life depression, stress levels and efficacy in caring for residents, and MHT levels of geropsychology competencies. Residents receiving the intervention are hypothesised to report a greater decrease in depressive symptoms between T1 and T3 compared to residents receiving usual care. The primary analysis is a regression, clustered over site to account for correlated readings, and independent variables are condition and depressive symptoms at T1. A cost-utility analysis is also undertaken. DISCUSSION: ELATE is a comprehensive CBT intervention for reducing depressive symptoms in RAC residents. It is designed to be implemented in collaboration with facility staff and residents' families, individually tailored to residents with normal cognition to mild cognitive impairment and delivered by trainee therapists. ELATE offers a model that may be widely applicable across the RAC sector. TRIAL REGISTRATION: Trial registered with the Australian and New Zealand Clinical Trial Registry (ANZCTR) Number ACTRN12619001037190, prospectively registered on 22 July 2019.

What Constitutes Preferred Long-Term Care Provided in Residential Aged Care Facilities? An Empirical Comparison of the Preferences of the General Population, Residents, and Family Members.

OBJECTIVES: Relatively few studies to date have examined the preferences of members of the general population as potential future consumers of long-term aged care services. This study aimed to use discrete choice experiment methodology to compare the preferences of 3 groups: the general population, residents, and family members of people living in long-term aged care. METHODS: A total of 6 salient attributes describing the physical and psychosocial care in long-term residential aged care were drawn from qualitative research with people with a lived experience of aged care and were used to develop the discrete choice experiment questionnaire. The 6 attributes included: the level of time care staff spent with residents, homeliness of shared spaces, the homeliness of their own rooms, access to outside and gardens, frequency of meaningful activities, and flexibility with care routines. The questionnaire was administered to 1243 respondents including consumers (residents [n = 126], family member carers [n = 416]), and members of the general population (n = 701). RESULTS: For both the general population and resident samples, having their own room feeling "home-like" exhibited the largest impact upon overall preferences. For the family member sample, care staff being able to spend enough time exhibited the largest impact. Tests of poolability indicated that the resident and general population samples estimates could be pooled. The null hypothesis of equal parameters between the groups was rejected for the family members, indicating significant differences in preferences relative to the resident and the general population samples. CONCLUSIONS: This study illustrates that preferences for residential aged care delivery may vary depending upon perspective and experience.

A comparison of dietary quality and nutritional adequacy of popular energy-restricted diets against the Australian Guide to Healthy Eating and the Mediterranean Diet.

There is limited information regarding the nutrition profile and diet quality of meal plans from currently popular weight loss (WL) diets in Australia. This includes the energy content (kilojoules), the macronutrient distribution and the micronutrient composition. Further, these diets have not been compared with current government guidelines and healthy eating principles (HEP) for nutritional adequacy. Popular diets were identified through grey literature, trending searches and relative popularity in Australia. Meal plans for each diet were analysed using Foodworks Dietary Software to determine food group intake, micronutrient and macronutrient distribution. The results indicated that all popular diets assessed deviated from government recommended HEP such as the Australian Guide to Healthy Eating and the Mediterranean diet. In most cases, both popular diets and the HEP had low intakes of multiple food groups, low intakes of essential micronutrients and a distorted macronutrient distribution. Popular diets may not provide adequate nutrition to meet needs, particularly in the long term and potentially resulting in micronutrient deficiency. When energy restricting for WL, meal plans should be highly individualised in conjunction with a qualified nutrition professional to ensure adequate dietary intake.

Physical environmental designs in residential care to improve quality of life of older people.

BACKGROUND: The demand for residential aged care is increasing due to the ageing population. Optimising the design or adapting the physical environment of residential aged care facilities has the potential to influence quality of life, mood and function. OBJECTIVES: To assess the effects of changes to the physical environment, which include alternative models of residential aged care such as a 'home-like' model of care (where residents live in small living units) on quality of life, behaviour, mood and depression and function in older people living in residential aged care. SEARCH METHODS: CENTRAL, MEDLINE, Embase, six other databases and two trial registries were searched on 11 February 2021. Reference lists and grey literature sources were also searched. SELECTION CRITERIA: Non-randomised trials, repeated measures or interrupted time series studies and controlled before-after studies with a comparison group were included. Interventions which had modified the physical design of a care home or built a care home with an alternative model of residential aged care (including design alterations) in order to enhance the environment to promote independence and well-being were included. Studies which examined quality of life or outcomes related to quality of life were included. Two reviewers independently assessed the abstracts identified in the search and the full texts of all retrieved studies. DATA COLLECTION AND ANALYSIS: Two reviewers independently extracted data, assessed the risk of bias in each included study and evaluated the certainty of evidence according to GRADE criteria. Where possible, data were represented in forest plots and pooled. MAIN RESULTS: Twenty studies were included with 77,265 participants, although one large study included the majority of participants (n = 74,449). The main comparison was home-like models of care incorporating changes to the scale of the building which limit the capacity of the living units to smaller numbers of residents and encourage the participation of residents with domestic activities and a person-centred care approach, compared to traditional designs which may include larger-scale buildings with a larger number of residents, hospital-like features such as nurses' stations, traditional hierarchical organisational structures and design which prioritises safety. Six controlled before-after studies compared the home-like model and the traditional environment (75,074 participants), but one controlled before-after study included 74,449 of the participants (estimated on weighting). It is uncertain whether home-like models improve health-related quality of life, behaviour, mood and depression, function or serious adverse effects compared to traditional designs because the certainty of the evidence is very low. The certainty of the evidence was downgraded from low-certainty to very low-certainty for all outcomes due to very serious concerns due to risk of bias, and also serious concerns due to imprecision for outcomes with more than 400 participants. One controlled before-after study examined the effect of home-like models on quality of life. The author stated "No statistically significant differences were observed between the intervention and control groups." Three studies reported on global behaviour (N = 257). One study found little or no difference in global behaviour change at six months using the Neuropsychiatric Inventory where lower scores indicate fewer behavioural symptoms (mean difference (MD) -0.04 (95% confidence interval (CI) -0.13 to 0.04, n = 164)), and two additional studies (N = 93) examined global behaviour, but these were unsuitable for determining a summary effect estimate. Two controlled before-after studies examined the effect of home-like models of care compared to traditional design on depression. After 18 months, one study (n = 242) reported an increase in the rate of depressive symptoms (rate ratio 1.15 (95% CI 1.02 to 1.29)), but the effect of home-like models of care on the probability of no depressive symptoms was uncertain (odds ratio 0.36 (95% CI 0.12 to 1.07)). One study (n = 164) reported little or no difference in depressive symptoms at six months using the Revised Memory and Behaviour Problems Checklist where lower scores indicate fewer depressive symptoms (MD 0.01 (95% CI -0.12 to 0.14)). Four controlled before-after studies examined function. One study (n = 242) reported little or no difference in function over 18 months using the Activities of Daily Living long-form scale where lower scores indicate better function (MD -0.09 (95% CI -0.46 to 0.28)), and one study (n = 164) reported better function scores at six months using the Interview for the Deterioration of Daily Living activities in Dementia where lower scores indicate better function (MD -4.37 (95% CI -7.06 to -1.69)). Two additional studies measured function but could not be included in the quantitative analysis. One study examined serious adverse effects (physical restraints), and reported a slight reduction in the important outcome of physical restraint use in a home-like model of care compared to a traditional design (MD between the home-like model of care and traditional design -0.3% (95% CI -0.5% to -0.1%), estimate weighted n = 74,449 participants at enrolment).  The remaining studies examined smaller design interventions including refurbishment without changes to the scale of the building, special care units for people with dementia, group living corridors compared to a non-corridor design, lighting interventions, dining area redesign and a garden vignette. AUTHORS' CONCLUSIONS: There is currently insufficient evidence on which to draw conclusions about the impact of physical environment design changes for older people living in residential aged care. Outcomes directly associated with the design of the built environment in a supported setting are difficult to isolate from other influences such as health changes of the residents, changes to care practices over time or different staff providing care across shifts. Cluster-randomised trials may be feasible for studies of refurbishment or specific design components within residential aged care. Studies which use a non-randomised design or cluster-randomised trials should consider approaches to reduce risk of bias to improve the certainty of evidence.

Prevalence and determinants of physical frailty among people living in residential aged care facilities: a large-scale retrospective audit.

BACKGROUND: Physical frailty is associated with increased risk of falls, hospitalisation and mortality. There is a dearth of information on physical frailty of older adults living in residential aged care. This study aimed to describe physical frailty in aged care residents and investigate possible determinants of frailty. METHOD: A retrospective audit of resident records was undertaken across 14 residential aged care facilities. Data were extracted on all consenting residents who had completed measures relating to frailty (Short Physical Performance Battery SPPB; grip strength). All data of the first record of measures were extracted, resident characteristics, and the time from admission to assessment. Summary statistics were completed. Differences between sub-groups were explored (Mann-Whitney U, Kruskall-Wallis Ranked tests). Associations between variables were explored with Chi-squared and Pearson correlations. Determinants of physical frailty were determined with linear regression analyses. Alpha (2-sided) was 0.05. RESULTS: Data were extracted for 1241 residents (67% female), with a mean age of 86.0 (7.6) years. Males had a significantly lower time from admission to assessment of frailty (p ≤ 0.001). The average SPPB score was 4.1 (3.3), 75% of residents were frail and 19% pre-frail. Bivariate analyses indicated no significant relationships between grip strength and SPPB score, but significant differences for grip strength, where males were significantly stronger (males 20.2 ± 8.3 kg; females 12.4 ± 5.4 kg; p ≤ 0.001). There was a significant positive relationship between SPPB total score and grip strength, gender (p ≤ 0.001), and marital status (p = 0.049) and a negative relationship between time from admission to assessment and SPPB total score (p ≤ 0.001). There were significant negative relationships between gender (p ≤ 0.001) and age (p ≤ 0.001), and time from admission to assessment (p ≤ 0.001) with grip strength. CONCLUSION: Older adults living in residential aged care have a high level of physical frailty which may lead to increased risk of adverse outcomes. Time in the residential aged care setting and age appear to predict physical frailty. There is a need for a consistent battery of measures to continually monitor frailty and programs to address the high levels of frailty in residential aged care.

Developing and implementing a new methodology to test the affordability of currently popular weight loss diet meal plans and healthy eating principles.

BACKGROUND: Weight loss diets continue to rise in popularity; however, the associated costs are seldom reported. Certain weight loss diets may be unaffordable and differ from their traditional nutrition composition to include non-conventional premium products. In contrast, healthy eating principles such as the Australian Guide to Healthy Eating (AGHE) and the Mediterranean Diet (MedDiet) place an emphasis on fresh produce and staple foods but are sometimes thought to be unaffordable. A new methodology was piloted to assess the cost of weight loss diets using seven meal plans. METHODS: Seven meal plans were analysed to quantify the absolute grams required of all ingredients across seven days and multiplied by the cost of the ingredient per gram to determine the total cost of each ingredient based on unit size and price. The weekly grocery shopping cost was determined through summation of all ingredients and their entire unit size to compare weekly costs. RESULTS: Weekly meal plans (absolute grams) cost between $93-193AUD. The AGHE meal plan was the least expensive and 8 Weeks to Wow was the most expensive. Weekly grocery shopping of entire units cost between $345-$625AUD, over $100AUD greater than the spending of an average Australian ($237AUD/week). CONCLUSIONS: The financial feasibility for long-term sustainment of weight loss diets may be questionable for groups including low-income earners and low socioeconomic status. Further, when dietary patterns are adapted for weight loss, or followed by consumers, deviations from foundational principles tend to occur which may influence overall cost.

Creating 'Partnership in iSupport program' to optimise family carers' impact on dementia care: a randomised controlled trial protocol.

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the 'Partnership in iSupport program' that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers' experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers' experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the 'Partnership in iSupport program' in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718 . Registered February 4th, 2022.

What quality of life domains are most important to older adults in residential care?

Quality of life is a critically important outcome measure in aged care. However, few studies have provided a detailed examination of what quality of life means to older adults living in residential care. In the current study, N = 43 older adults (67 to 99 years) living in six residential aged care facilities in four Australian states took part in semi-structured interviews. Participants had normal cognition through to mild /moderate cognitive impairment as measured by the PAS-Cog, were able to provide informed consent, and could participate in an interview conducted in English. Interviews were transcribed, and data was analyzed in NVivo using thematic analysis. Both physical and psycho-social aspects were identified as important for older adults' quality of life with six key quality of life domains identified: independence, mobility, pain management, social connections, emotional well-being, and activities. More research is needed to test these domains with a more diverse sample of older adults living in residential aged care, in particular older adults from culturally and linguistically diverse communities. Such qualitative work is essential for the development of suitable quality of life measures for this population and provides valuable information to inform improvements to care practices and service provision. Some ways in which the identified quality of life domains could be used to enhance care provision are discussed.

Developing dimensions for a new preference-based quality of life instrument for older people receiving aged care services in the community.

PURPOSE: To identify the salient quality of life characteristics relevant to older people in receipt of community aged care services in order to develop dimensions for a draft descriptive system for a new preference-based quality of life instrument. METHODS: Forty-one in-depth semi-structured interviews were undertaken with older people (65 years and over) receiving community aged care services across three Australian states to explore quality of life characteristics of importance to them. The data were analysed using framework analysis to extract broader themes which were organised into a conceptual framework. The data were then summarised into a thematic chart to develop a framework matrix which was used to interpret and synthesise the data. Care was taken throughout to retain the language that older people had adopted during the interviews to ensure that appropriate language was used when identifying and developing the quality of life dimensions. RESULTS: The analysis resulted in the identification of five salient quality of life dimensions: independence, social connections, emotional well-being, mobility, and activities. CONCLUSION: This research finds that quality of life for older people accessing aged care services goes beyond health-related quality of life and incorporates broader aspects that transcend health. The findings represent the first stage in a multiphase project working in partnership with older people to develop a new preference-based instrument of quality of life for informing quality assessment and economic evaluation in community aged care. In future work, draft items will be developed from these dimensions and tested in face validity interviews before progressing to further psychometric testing.

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.

Re-thinking reablement strategies for older adults in residential aged care: a scoping review.

BACKGROUND: The number of older adults in residential aged care is increasing. Aged care residents have been shown to spend most of the day sedentary and have many co-morbidities. This review aimed to systematically explore the effectiveness of reablement strategies in residential aged care for older adults' physical function, quality of life and mental health, the features of effective interventions and feasibility (compliance, acceptability, adverse events and cost effectiveness). METHOD: This scoping review was undertaken according to PRISMA guidelines (extension for scoping reviews). Five e-databases (Medline, Embase, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and CINAHL) were searched from 2010 onwards. Randomised controlled trials investigating reablement strategies addressing physical deconditioning for older adults (mean age ≥ 65 yrs) in residential aged care on physical function, quality of life or mental health were included. Feasibility of the interventions (compliance, acceptability, satisfaction, adverse events and cost effectiveness) was explored. RESULTS: Five thousand six hundred thirty-one citations were retrieved, and 63 studies included. Sample sizes ranged from 15 to 322 and intervention duration from one to 12 months. Exercise sessions were most often conducted two to three times per week (44 studies) and physiotherapist-led (27 studies). Interventions were predominately multi-component (28 studies, combinations of strength, balance, aerobic, functional exercises). Five interventions used technology. 60% of studies measuring physical function reported significant improvement in the intervention versus control, 40% of studies measuring quality of life reported significant improvements in favour of the intervention, and 26% of studies measuring mental health reported significant intervention benefits. Over half of the studies measured compliance and adverse events, four measured acceptability and none reported cost effectiveness. CONCLUSIONS: There has been a research surge investigating reablement strategies in residential aged care with wide variability in the types and features of strategies and outcome measures. Few studies have measured acceptability, or cost effectiveness. Exploration of core outcomes, mapping stakeholders and co-designing a scalable intervention is warranted. TRIAL REGISTRATION: Prospectively registered review protocol (Open Science Framework: DOI https://doi.org/10.17605/OSF.IO/7NX9M ).

The EPIPHA-KNEE trial: Explaining Pain to target unhelpful pain beliefs to Increase PHysical Activity in KNEE osteoarthritis - a protocol for a multicentre, randomised controlled trial with clinical- and cost-effectiveness analysis.

BACKGROUND: Despite well-established benefits of physical activity for knee osteoarthritis (OA), nine of ten people with knee OA are inactive. People with knee OA who are inactive often believe that physical activity is dangerous, fearing that it will further damage their joint(s). Such unhelpful beliefs can negatively influence physical activity levels. We aim to evaluate the clinical- and cost-effectiveness of integrating physiotherapist-delivered pain science education (PSE), an evidence-based conceptual change intervention targeting unhelpful pain beliefs by increasing pain knowledge, with an individualised walking, strengthening, and general education program. METHODS: Two-arm, parallel-design, multicentre randomised controlled trial involving 198 people aged ≥50 years with painful knee OA who do not meet physical activity guideline recommendations or walk regularly for exercise. Both groups receive an individualised physiotherapist-led walking, strengthening, and OA/activity education program via 4x weekly in-person treatment sessions, followed by 4 weeks of at-home activities (weekly check-in via telehealth), with follow-up sessions at 3 months (telehealth) and 5 and 9 months (in-person). The EPIPHA-KNEE group also receives contemporary PSE about OA/pain and activity, embedded into all aspects of the intervention. Outcomes are assessed at baseline, 12 weeks, 6 and 12 months. Primary outcomes are physical activity level (step count; wrist-based accelerometry) and self-reported knee symptoms (WOMAC Total score) at 12 months. Secondary outcomes are quality of life, pain intensity, global rating of change, self-efficacy, pain catastrophising, depression, anxiety, stress, fear of movement, knee awareness, OA/activity conceptualisation, and self-regulated learning ability. Additional measures include adherence, adverse events, blinding success, COVID-19 impact on activity, intention to exercise, treatment expectancy/perceived credibility, implicit movement/environmental bias, implicit motor imagery, two-point discrimination, and pain sensitivity to activity. Cost-utility analysis of the EPIPHA-KNEE intervention will be undertaken, in addition to evaluation of cost-effectiveness in the context of primary trial outcomes. DISCUSSION: We will determine whether the integration of PSE into an individualised OA education, walking, and strengthening program is more effective than receiving the individualised program alone. Findings will inform the development and implementation of future delivery of PSE as part of best practice for people with knee OA. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry: ACTRN12620001041943 (13/10/2020).

Protocol for the economic evaluation of the InTENSE program for rehabilitation of chronic upper limb spasticity.

BACKGROUND: Assessment of the costs of care associated with chronic upper-limb spasticity following stroke in Australia and the potential benefits of adding intensive upper limb rehabilitation to botulinum toxin-A are key objectives of the InTENSE randomised controlled trial. METHODS: Recruitment for the trial has been completed. A total of 139 participants from 6 stroke units across 3 Australian states are participating in the trial. A cost utility analysis will be undertaken to compare resource use and costs over 12 months with health-related quality of life outcomes associated with the intervention relative to a usual care comparator. A cost effectiveness analysis with the main clinical measure of outcome, Goal Attainment Scaling, will also be undertaken. The primary outcome measure for the cost utility analysis will be the incremental cost effectiveness ratio (ICER) generated from the incremental cost of the intervention as compared to the incremental benefit, as measured in quality adjusted life years (QALYs) gained. The utility scores generated from the EQ-5D three level instrument (EQ-5D-3 L) measured at baseline, 3 months and 12 months will be utilised to calculate the incremental Quality Adjusted Life Year (QALY) gains for the intervention relative to usual care using area-under the curve methods. DISCUSSION: The results of the economic evaluation will provide evidence of the total costs of care for patients with chronic upper limb spasticity following stroke. It will also provide evidence for the cost-effectiveness of adding evidence-based movement therapy to botulinum toxin-A as a treatment, providing important information for health system decision makers tasked with the planning and provision of services.

Economic Evaluation of Stem Cell Therapies in Neurological Diseases: A Systematic Review.

OBJECTIVES: To examine economic evaluation studies of stem cell therapies (SCTs) in neurological disorders and to provide an overview of the quality of the economic evidence available on this topic. METHODS: The review examined studies that performed an economic evaluation of the use of stem cells in adult patients with neurological diseases and that were published in English during the period 2007 to 2017. Data analyzed and reported included study population, disease indication, main analytical approaches for the economic analysis and perspective, key assumptions made or tested in sensitivity analyses, cost outcomes, estimates of incremental cost effectiveness, and approaches to quantifying decision uncertainty. RESULTS: A total of three studies reporting on the findings of the economic evaluation of the use of SCT in stroke, Parkinson disease, and secondary progressive multiple sclerosis, respectively, were identified. All three studies conducted a cost-utility analysis using decision-analytic models and reported an incremental cost per quality-adjusted life-years gained (incremental cost-effectiveness ratio) versus standard care. These studies reported meaningful cost savings in stroke, Parkinson disease, and secondary progressive multiple sclerosis in the base-case scenarios. CONCLUSIONS: Despite significant progress in clinical research in the use of SCT in neurological diseases, economic evaluation of these therapies is still at a nascent stage. Given the early stage of research inputs (clinical and cost outcomes data) into the models per se, further research is urgently needed to enable meaningful assessment of the cost effectiveness of these advanced therapies and to ensure sustainable access for population groups most likely to benefit in clinical practice.