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, QCE-ACC, ASCOT, EQ-5D-5L and two 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: 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 ASCOT (r=0.59, p<0.001), EQ-5D-5L (r=0.65, p<0.001), EQ-VAS (r=0.53, p<0.001) and a lower correlation with the QCE-ACC (r=0.41, p<0.001). 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.

The experience of using home automation by individuals with disability.

Purpose: People with disability often require long-term support within the home. Advances in technology have made home automation more readily available to support people living with disability. However, few studies describe the perspectives of people using home automation. The aim of this study was to explore the experience of individuals living with long term serious disability using home automation.Materials and methods: A phenomenological approach was adopted. In-depth, semi-structured interviews were conducted. Data were analysed using an inductive approach to identify themes.Results: Two overarching categories of themes were identified: 'benefits' and 'challenges'. Benefits captured the outcomes experienced by people living with disability using home automation and the impact upon their lives. Participants described several challenges with using home automation such as self-advocating to receive home automation, long waiting periods in the assessment and installation process, frustrations when home automation did not work, and the challenges experienced from being without home automation.Conclusion: This research identified the benefits and challenges of home automation experienced by people with long term serious disability. The findings can be used to understand the importance of home automation and the impact it has upon the lives of people living with disability.

It is recognised that home automation can have a positive impact upon the lives of people living with disability.Funding for home automation is a complicated process with long waiting times. This process needs to be readdressed in order for people to receive home automation in a timely manner to prevent negative experiences.Home automation within the community could support people living with disability to access the community more.It is important to develop facilities and communities that are accessible and inclusive for people with disabilities.

A scoping review to explore the health, social and economic outcomes of home automation for people with disability.

PURPOSE: People with disability often require long-term care. Long-term care is changing with the availability and advances in cost and function of technologies, such as home automation. Home automation has the potential to reduce paid carer hours and can potentially offer many benefits to people with a disability. The aim of this scoping review is to identify the health, social and economic outcomes experienced by people living with a disability who use home automation. MATERIALS AND METHODS: Two electronic databases were searched by title and abstract to identify international literature that describes home automation experiences from the perspectives of people with disability. A thematic approach was taken to synthesise the data to identify the key outcomes from home automation. RESULTS: The review identified 11 studies reporting home automation outcomes for people living with a disability. Seven outcomes were associated with home automation: independence, autonomy, participation in daily activities, social and community connectedness, safety, mental health, and paid care and informal care. CONCLUSION: Advances in technology and changes in funding to support people living with a disability have made access to home automation more readily available. Overall, the study findings showed that there is a range of potential benefits of home automation experienced by individuals living with a disability.Implications for RehabilitationA wide range of outcomes have been evaluated following the installation of home automation systems for people with disability.Key outcomes evaluated to date include independence, autonomy, participation, safety, mental health, and reduced need for paid carers.Outcomes of home automation appear to be connected; for example, improved participation may lead to improved mental health.

The Use of Digital Technologies in the Inpatient Setting to Promote Communication During the Early Stage of an Infectious Disease Outbreak: A Scoping Review.

Background: Infectious disease outbreaks disrupt inpatient clinical care and have an impact on staff and patients' ability to communicate with each other and with the wider community. Digital technology may offer opportunities for communication in the inpatient setting during infectious disease outbreaks. Aim: This scoping review aimed to investigate the use of digital technology in the inpatient setting to promote communication in the early stages of an infectious disease outbreak. Methods: There were three aspects to this scoping review: (1) a database search of Ovid MEDLINE (MEDLINE), Cumulative Index of Nursing and Allied Health Literature (CINAHL), Association for Computing Machinery Digital Library (ACM) and IEEE Xplore (IEEE) exploring peer-reviewed articles, (2) a gray literature search, and (3) a media search. Results: Results focused on the early stages of the COVID-19 pandemic. Thirty-eight peer-reviewed articles were extracted from the database search. There were three main areas of investigation: study characteristics, technology features, and benefits and barriers. Forty-four websites were searched for the gray literature search focusing on policy and guidance. Eighteen media articles were retrieved focusing on patients' use of technology and community involvement. Conclusion: Results demonstrate the diverse use of digital technology in the inpatient setting to facilitate communication during the early stages of the COVID-19 pandemic. However, the articles provide limited data to allow readers to fully understand and reproduce described actions. Furthermore, there was limited guidance to support clinicians to communicate using digital technology to create trusting therapeutic relationships. Areas for future development include standard reporting process for technology hardware, software, and content; and structured reporting and evaluation of the implementation of technologies.

What Quality-of-Life Dimensions Are Most Important to Older Adults from Culturally and Linguistically Diverse Backgrounds Receiving Aged Care Services? An Exploratory Study.

There is little research on what aspects of quality of life (QoL) are most important to culturally and linguistically diverse (CALD) older adults. This study aimed to identify what QoL dimensions were most important to CALD older adults receiving aged care services, and therefore, how relevant a new six dimensions QoL instrument developed for use in aged care is to this population. A three-stage, mixed-methods study was undertaken. Stage 1: n = 3 focus groups with aged care providers. Stage 2: n = 30 semi-structured interviews with Italian-born older adults in ethno-specific residential aged care. Stage 3: survey of n = 63 older adults from mixed CALD backgrounds receiving community aged care services. Overall, older adults asserted the importance of the six dimensions of the new QoL instrument. The importance of 'identity' and 'purpose and meaning' were identified via the focus groups; however, the community-based CALD older adults identified these aspects of quality of life as more important than older Italians in residential care. Being in ethno-specific residential aged care where needs relating to language, food, and religion were met and they continued to live with others from their community may have meant that the meeting of cultural needs was more taken for granted.

Home Automation for Adults With Disability Following an Injury: Protocol for a Social Return on Investment Study.

BACKGROUND: People with disability following a serious injury require long-term care. The most common injuries resulting in long-term disability are spinal cord and acquired brain injuries. While the long-term effects are difficult to predict and will vary between individuals, the costs of care and recovery span well beyond the initial treatment phase and include long-term care. Long-term care is changing with the availability and advances in cost and function of technologies, such as home automation. "Home automation" refers to technology that automates or remotely controls household functions. Home automation costs vastly differ, but home automation has the potential to positively impact the lives of people with disabilities. However, there is a dearth of evidence relating to the impact of home automation for people with a disability and few rigorous evaluations about the costs and return on investment. OBJECTIVE: The purpose of this study is to describe the impact of home automation for people with long-term disability following a serious injury (such as a motor vehicle accident) using case studies, and by conducting an evaluation of the costs and outcomes for individuals, families, and the wider community using a Social Return on Investment (SROI) approach. METHODS: SROI is a form of economic evaluation that develops a theory of change to examine the relationship among inputs, outputs, and outcomes and, in recent years, has gained popularity internationally, including in Australia. SROI has six phases: (1) identify scope and stakeholders, (2) map outcomes, (3) evidence outcomes and give them value, (4) establish impact, (5) calculate the SROI, and (6) report findings. Individuals with a disability who use home automation and key stakeholders will be interviewed. Stakeholders will be individuals involved in home automation for people with disabilities, such as allied health professionals, medical practitioners, equipment suppliers, engineers, and maintenance professionals. Users of home automation will be people who have a disability following a serious injury, have the capacity to provide consent, and have 1 or more elements of home automation. The impact of home automation will be established with financial proxies and appropriate discounts applied to avoid overestimating the social return. The SROI ratio will be calculated, and findings will be reported. RESULTS: The project was funded in November 2021 by the Lifetime Support Authority. Recruitment is underway, and data collection is expected to be completed by October 2022. The final results of the study will be published in March 2023. CONCLUSIONS: To our knowledge, this study represents the first study in Australia and internationally to employ SROI to estimate the social, personal, and community outcomes of home automation for people with a disability following a serious injury. This research will provide valuable information for funders, consumers, researchers, and the public to guide and inform future decision-making. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/42493.

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.

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.

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.

What defines quality of care for older people in aged care? A comprehensive literature review.

The quality of the care provided to frail older people in aged care is a concern for all Australians and for the citizens of many other countries internationally. This paper summarizes the methods and findings from an Australian study commissioned by the Royal Commission into Aged Care Quality and Safety to identify and synthesize international literature relating to the quality of care in aged care. A comprehensive literature review was undertaken to search and identify the literature (grey and peer reviewed) relating to quality of care and/or person-centered care in aged care. The review identified nine key themes as salient to the quality of care experience, which include treating the older person with respect and dignity; acknowledging and supporting their spiritual, cultural, religious and sexual identity; the skills and training of the aged care staff providing care; relationships between the older person and the aged care staff; social relationships and the community; supporting the older person to make informed choices; supporting the older person's health and well-being; ensuring the delivery of safe care in a comfortable service environment; and the ability to make complaints and provide feedback to the aged care organization. In practice, particularly in the context of residential care, quality of care has traditionally been measured using clinical indicators of care quality. These findings highlight the central importance of person-centered care and care experience as fundamental tenets of the quality of aged care service delivery in Australia and internationally. Geriatr Gerontol Int 2021; 21: 765-778.

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.

Using social return on investment analysis to calculate the social impact of modified vehicles for people with disability.

INTRODUCTION: Returning to driving is often a goal for people with acquired disabilities. Vehicle modifications make it possible for people with both acquired and lifelong disabilities to drive yet can be costly. There has been no financial evaluation of vehicle modifications in Australia or internationally. METHODS: A social return on investment analysis of vehicle modifications was undertaken. Primary data were collected via qualitative interviews with consumers and other stakeholders (e.g. driver-trained occupational therapists, rehabilitation physicians, driving instructors, vehicle modifiers) (n = 23). Secondary data were collected from literature searches and used to identify suitable financial proxies and make estimations of the proportion of drivers with vehicle modifications experiencing each outcome. A co-investment model was adopted to estimate social return on investment and payback period for funder and consumer. Five scenarios were developed to illustrate social return for low-cost modifications (Scenario 1) through to high-cost modifications (Scenario 5). RESULTS: Social return on investment ratios was positive for funder and consumer investment in all five scenarios. Social return on investment calculations based on co-investment ranged from $17.32 for every $1 invested (Scenario 1) to $2.78 for every $1 invested (Scenario 5). Consumers' payback periods were between 5.4 and 7.1 months, and funders between 3.5 weeks and 2 years 8.4 months. CONCLUSION: Vehicle modifications represent sound investments for both funders and consumers. Given the short payback periods, funders should reconsider age restrictions on vehicles considered suitable for modifications, especially for low- to medium-cost modifications.

A Review of the Development and Application of Generic Preference-Based Instruments with the Older Population.

Older people (aged 65 years and over) are the fastest growing age cohort in the majority of developed countries, and the proportion of individuals defined as the oldest old (aged 80 years and over) living with physical frailty and cognitive impairment is rising. These population changes put increasing pressure on health and aged care services, thus it is important to assess the cost effectiveness of interventions targeted for older people across health and aged care sectors to identify interventions with the strongest capacity to enhance older peoples' quality of life and provide value for money. Cost-utility analysis (CUA) is a form of economic evaluation that typically uses preference-based instruments to measure and value health-related quality of life for the calculation of quality-adjusted life-years (QALYS) to enable comparisons of the cost effectiveness of different interventions. A variety of generic preference-based instruments have been used to measure older people's quality of life, including the Adult Social Care Outcomes Toolkit (ASCOT); Health Utility Index Mark 2 (HUI2); Health Utility Index Mark 3 (HUI3); Short-Form-6 Dimensions (SF-6D); Assessment of Quality of Life-6 dimensions (AQoL-6D); Assessment of Quality of Life-8 dimensions (AQoL-8D); Quality of Wellbeing Scale-Self-Administered (QWB-SA); 15 Dimensions (15D); EuroQol-5 dimensions (EQ-5D); and an older person specific preference-based instrument-the Investigating Choice Experiments Capability Measure for older people (ICECAP-O). This article reviews the development and application of these instruments within the older population and discusses the issues surrounding their use with this population. Areas for further research relating to the development and application of generic preference-based instruments with populations of older people are also highlighted.