Primary, allied health, selected specialists, and mental health service utilisation by home care recipients in Australia before and after accessing the care, 2017-2019.

OBJECTIVES: To examine changes in primary, allied health, selected specialists, and mental health service utilisation by older people in the year before and after accessing home care package (HCP) services. METHODS: A retrospective cohort study using the Registry of Senior Australians Historical National Cohort (≥ 65 years old), including individuals accessing HCP services between 2017 and 2019 (N = 109,558), was conducted. The utilisation of general practice (GP) attendances, health assessments, chronic disease management plans, allied health services, geriatric, pain, palliative, and mental health services, subsidised by the Australian Government Medicare Benefits Schedule, was assessed in the 12 months before and after HCP access, stratified by HCP level (1-2 vs. 3-4, i.e., lower vs. higher care needs). Relative changes in service utilisation 12 months before and after HCP access were estimated using adjusted risk ratios (aRR) from Generalised Estimating Equation Poisson models. RESULTS: Utilisation of health assessments (7-10.2%), chronic disease management plans (19.7-28.2%), and geriatric, pain, palliative, and mental health services (all ≤ 2.5%) remained low, before and after HCP access. Compared to 12 months prior to HCP access, 12 months after, GP after-hours attendances increased (HCP 1-2 from 6.95 to 7.5%, aRR = 1.07, 95% CI 1.03-1.11; HCP 3-4 from 7.76 to 9.32%, aRR = 1.20, 95%CI 1.13-1.28) and allied health services decreased (HCP 1-2 from 34.8 to 30.7%, aRR = 0.88, 95%CI 0.87-0.90; HCP levels 3-4 from 30.5 to 24.3%, aRR = 0.80, 95%CI 0.77-0.82). CONCLUSIONS: Most MBS subsidised preventive, management and specialist services are underutilised by older people, both before and after HCP access and small changes are observed after they access HCP.

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.

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.

Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study.

OBJECTIVES: No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable. METHODS: Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to 'think aloud') format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades. RESULTS: Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade. CONCLUSIONS: Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.

Constructing country-specific quality-of-life item banks for adults with amblyopia and strabismus in Australia and India.

CLINICAL RELEVANCE: Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management. BACKGROUND: Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues. METHODS: Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared. RESULTS: The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems. CONCLUSION: Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.

A systematic review of the measurement properties of aspects of psychological capacity in older adults.

OBJECTIVE: to examine the measurement properties of instruments that have been used to measure aspects of psychological capacity in adults aged 60 years and over. METHODS: the databases PsycINFO, MEDLINE, EMCARE and Scopus from 2010 were searched using search terms related to psychological capacity, older persons and measurement properties. Both data extraction and risk-of-bias assessment were conducted using the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) criteria using Covidence software. RESULTS: the full text of 326 articles were reviewed and a total of 30 studies were included, plus two further articles identified from reference lists (n = 32). No single instrument measuring psychological capacity was identified. Twenty (n = 20) instruments were identified that measure seven constructs of psychological capacity: Resilience; Sense of coherence; Hope; Mindfulness; Optimism; Attachment to life; Emotional regulation. CONCLUSIONS: this systematic review identified potential measures of psychological capacity in older adults. The review will inform further work to develop a single comprehensive measure of psychological capacity in older adults.

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

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

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.

Primary, allied health, geriatric, pain and palliative healthcare service utilisation by aged care residents, 2012-2017.

OBJECTIVES: To examine the incidence and trends in primary care, allied health, geriatric, pain and palliative care service use by permanent residential aged care (PRAC) residents and the older Australian population. METHODS: Repeated cross-sectional analyses on PRAC residents (N = 318,484) and the older (≥65 years) Australian population (N ~ 3.5 million). Outcomes were Medicare Benefits Schedule (MBS) subsidised primary care, allied health, geriatric, pain and palliative services between 2012-13 and 2016-17. GEE Poisson models estimated incidence rates and incidence rate ratios (IRR). RESULTS: In 2016-17, PRAC residents had a median of 13 (interquartile range [IQR] 5-19) regular general medical practitioner (GP) attendances, 3 (IQR 1-6) after-hours attendances and 5% saw a geriatrician. Highlights of utilisation changes from 2012-13 to 2016-17 include the following: GP attendances increased by 5%/year (IRR = 1.05, 95% confidence interval [CI] 1.05-1.05) for residents compared to 1%/year (IRR = 1.01, 95%CI 1.01-1.01) for the general population. GP after-hours attendances increased by 15%/year (IRR = 1.15, 95%CI 1.14-1.15) for residents and 9%/year (IRR = 1.08, 95%CI 1.07-1.20) for the general population. GP management plans increased by 12%/year (IRR = 1.12, 95%CI 1.11-1.12) for residents and 10%/year (IRR = 1.10, 95%CI 1.09-1.11) for the general population. Geriatrician consultations increased by 28%/year (IRR = 1.28, 95%CI 1.27-1.29) for residents compared to 14%/year (IRR = 1.14, 95%CI 1.14-1.15) in the general population. CONCLUSIONS: The utilisation of most examined services increased in both cohorts over time. Preventive and management care, by primary care and allied health care providers, was low and likely influences the utilisation of other attendances. PRAC residents' access to pain, palliative and geriatric medicine services is low and may not address the residents' needs.

Development of a Multivariable Prediction Model for Risk of Hospitalization With Pressure Injury After Entering Residential Aged Care.

OBJECTIVES: Although largely preventable, pressure injury is a major concern in individuals in permanent residential aged care (PRAC). Our study aimed to identify predictors and develop a prognostic model for risk of hospitalization with pressure injury (PI) using integrated Australian aged and health care data. DESIGN: National retrospective cohort study. SETTING AND PARTICIPANTS: Individuals ≥65 years old (N = 206,540) who entered 1797 PRAC facilities between January 1, 2009, and December 31, 2016. METHODS: PI, ascertained from hospitalization records, within 365 days of PRAC entry was the outcome of interest. Individual, medication, facility, system, and health care-related factors were examined as predictors. Prognostic models were developed using elastic nets penalized regression and Fine and Gray models. Area under the receiver operating characteristics curve (AUC) assessed model discrimination out-of-sample. RESULTS: Within 365 days of PRAC entry, 4.3% (n = 8802) of individuals had a hospitalization with PI. The strongest predictors for PI risk include history of PIs [sub-distribution hazard ratio (sHR) 2.41; 95% CI 1.77-3.29]; numbers of prior hospitalizations (having ≥5 hospitalizations, sHR 1.95; 95% CI 1.74-2.19); history of traumatic amputation of toe, ankle, foot and leg (sHR 1.72; 95% CI 1.44-2.05); and history of skin disease (sHR 1.54; 95% CI 1.45-1.65). Lower care needs at PRAC entry with respect to mobility, complex health care, and medication assistance were associated with lower risk of PI. The risk prediction model had an AUC of 0.74 (95% CI 0.72-0.75). CONCLUSIONS AND IMPLICATIONS: Our prognostic model for risk of hospitalization with PI performed moderately well and can be used by health and aged care providers to implement risk-based prevention plans at PRAC entry.

Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis.

OBJECTIVE: The aim of this study was to examine the level of agreement between self- and proxy-reporting of health-related quality of life (HRQoL) in children (under 18 years of age) using generic preference-based measures. METHODS: A systematic review of primary studies that reported agreement statistics for self and proxy assessments of overall and/or dimension-level paediatric HRQoL using generic preference-based measures was conducted. Where available, data on intraclass correlation coefficients (ICCs) were extracted to summarise overall agreement levels, and Cohen's kappa was used to describe agreement across domains. A meta-analysis was also performed to synthesise studies and estimate the level of agreement between self- and proxy-reported paediatric overall and domain-level HRQoL. RESULTS: Of the 30 studies included, 25 reported inter-rater agreement for overall utilities, while 17 reported domain-specific agreement. Seven generic preference-based measures were identified as having been applied: Health Utilities Index (HUI) Mark 2 and 3, EQ-5D measures, Child Health Utility 9 Dimensions (CHU9D), and the Quality of Well-Being (QWB) scale. A total of 45 dyad samples were included, with a total pooled sample of 3084 children and 3300 proxies. Most of the identified studies reported a poor inter-rater agreement for the overall HRQoL using ICCs. In contrast to more observable HRQoL domains relating to physical health and functioning, the inter-rater agreement was low for psychosocial-related domains, e.g., 'emotion' and 'cognition' attributes of both HUI2 and HUI3, and 'feeling worried, sad, or unhappy' and 'having pain or discomfort' domains of the EQ-5D. Parents demonstrated a higher level of agreement with children relative to health professionals. Child self- and proxy-reports of HRQoL showed lower agreement in cancer-related studies than in non-cancer-related studies. The overall ICC from the meta-analysis was estimated to be 0.49 (95% confidence interval 0.34-0.61) with poor inter-rater agreement. CONCLUSION: This study provides evidence from a systematic review of studies reporting dyad assessments to demonstrate the discrepancies in inter-rater agreement between child and proxy reporting of overall and domain-level paediatric HRQoL using generic preference-based measures. Further research to drive the inclusion of children in self-reporting their own HRQoL wherever possible and limiting the reliance on proxy reporting of children's HRQoL is warranted.

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

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

Psychometric Evaluation of Glaucoma Quality of Life Item Banks (GlauCAT) and Initial Assessment Using Computerized Adaptive Testing.

Purpose: To evaluate the psychometric properties of glaucoma-specific quality of life (QoL) item banks (GlauCAT) and assess their performance using computerized adaptive testing (CAT) simulations. Methods: In this cross-sectional study, 293 participants with glaucoma (mean age ± SD, 70.7 ± 13.2 years; 45% female) answered 342 items in 12 QoL item banks (IBs): Activity Limitation (AL); Driving (DV); Convenience (CV); Economic (EC); Emotional (EM); General Symptoms (GS); Health Concerns (HC); Lighting (LT); Mobility (MB); Ocular Surface Symptoms (OS); Social (SC); and Visual Symptoms (VS). These IBs were assessed using Rasch analysis, and CAT simulations with 1000 simulated respondents were utilized to determine the average number of items to be administered to achieve moderate and high precision levels. Results: The AL, DV, EM, HC, LT, MB, EC, OS, SC, and VS IBs required relatively minor amendments to achieve satisfactory psychometric fit. To resolve multidimensionality, we split CV into Treatment Convenience (TCV) and General Convenience (GCV). Due to poor measurement precision, the GS IB was not pursued further. This resulted in 12 total IBs. In CAT simulations, an average of 3.7 and 7.3 items per IB were required to attain measurement at moderate and high precision, respectively. Conclusions: Following rigorous psychometric assessment, we developed 12 valid glaucoma-specific QoL domains that can obtain highly precise person measure estimates using a small number of items. Translational Relevance: GlauCAT will enable researchers and clinicians to quickly and comprehensively assess the impact of glaucoma and its associated interventions across a range of QoL domains.

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

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

A Delphi study to identify content for a new questionnaire based on the 10 Principles of Dignity in Care.

AIM AND OBJECTIVE: To generate content for a new questionnaire, based on the 10 Principles of Dignity in Care. BACKGROUND: Older people in hospital are vulnerable and at risk of harm, including indignity. The 10 Principles of Dignity in Care, which undergird the United Kingdom's Dignity in Care Campaign, have been used to promote dignified care for older people in hospital. A 2006 recommendation of the campaign was to survey people on their experiences of dignity in care. To undertake such a survey, a questionnaire based on the 10 Principles of Dignity is required. DESIGN: Qualitative methods based on a modified Delphi technique, assessed against the CREDES checklist. METHODS: A Delphi panel of experts was convened that included: consumers, carers, clinicians, academics, policy experts and representatives from the National Dignity Council in the UK, Aboriginal people and people from culturally and linguistically diverse backgrounds. RESULTS: Fifty-seven experts consented to participate, over the three rounds of Delphi panel deliberations (response rate: R1 n = 49, R2 n = 47 and R3 n = 44). The Delphi panellists were asked to rank, rewrite, relocate or remove items and suggest additional items, under each of the 10 Principles of Dignity in Care. The initial list of 93 items, generated from a review of the literature, existing questionnaires and drafted by the authors, was reduced to 87 items in Round 2 and 69 items in Round 3. CONCLUSIONS: A panel of experts were able to determine, based on their own judgement, and through consensus, the 69-items and response categories to be included in the patient and carer versions of the Dignity in Care questionnaire, to progress to a pilot study.

Comparing the measurement properties of visual analogue and verbal rating scales.

PURPOSE: Utilising Rasch analysis on the Keratoconus Outcome Research Questionnaire (KORQ) data, we explored the hypothesis that the KORQ with discrete verbal rating scale (VRS) would demonstrate better psychometric properties and provide less noise in measurement than with a visual analogue scale (VAS). METHODS: The KORQ is a keratoconus-specific patient-reported outcome measure; it has activity limitation and symptoms scales. The KORQ scales with two different rating scales (VAS and a discrete 4-response VRS) were completed by self-administration by people with keratoconus. For each KORQ scale, Rasch analysis-based psychometric properties were compared between the two versions. Rasch analysis was also used to optimise rating scale functioning when disordered thresholds were observed. RESULTS: 118 (mean age ± SD, 46.4 ± 0.4 years) and 169 (45.4 ± 14.7 years) people completed the KORQ with VAS and VRS, respectively. Both scales demonstrated high measurement precision. However, the VAS rating scale was disordered (6 out of 11 categories dysfunctional) and had two misfitting items. Conversely, the VRS had ordered categories and no misfitting items. For the disordered VAS, ordering was achieved only after collapsing 11 categories into four categories. In comparison to the KORQ with VRS, the repaired VAS had lower measurement precision, test information, variance explained by the measure, poor targeting, and reduced measurement range. CONCLUSIONS: The KORQ demonstrated superior psychometric properties when measured using a VRS than with a VAS. This illustrates the advantages of verbal rating scales for a patient-reported outcome measurement over a visual analogue scale.

A retrospective evaluation of the Brain and Body Fitness Studio service on functional capacity and quality of life in people with neurological disorders.

Background: People with neurological disorders (ND) are less physically active than the general population due to physical, sensory, and/or cognitive impairments. These individuals often feel intimidated to join mainstream health and wellness centers due to lack of specialized support for people with ND. The Brain and Body Fitness Studio (BBFS) is one of the first Accredited Exercise Physiologist-led interprofessional services in Adelaide South Australia to provide individualized evidence-based multimodal exercise prescription and social support for this population. This comprehensive retrospective study evaluated the impact of BBFS on functional capacity (FC) determined as the 6-min walk distance (6 MWD) achieved during a 6-min walk test (6 MWT), of its members with ND. Methods: Sixty-two BBFS members (age, 66 ± 10 years; 60% male) with ND (85% Parkinson's Disease; average time since diagnosis, 4 years [IQR, 2 to 12 years]) and complete pre- and post-6-month clinical assessment of the primary outcome of the study, the 6 MWD, were included in this retrospective analysis. A series of sub-analyses were also performed to investigate the effects of adherence to the recommended prescription of at least twice a week in the program (≥80 vs. < 80% adherence), and disease stage (time since diagnosis; ≥6 vs. < 6 years) on FC. Results: Although there was no statistically significant change in 6 MWD from pre- to post-6-month BBFS program (+15 ± 90 m, p = 0.19), a clinically meaningful improvement of >14 m was evident. Improvement in 6 MWD was significantly greater in members who attended at least 80% of the recommended visits (≥80% visits, +37 ± 58 m; ≤ 80% visits,-1 ± 105 m, p = 0.046). We also found a 6 MWD improvement from pre- to post-6 months in those in the early years of their ND (< 6 years since diagnosis, +39 ± 76 m), but not in those in the later years of their ND (≥6 years since diagnosis, -36 ± 123 m, between group difference, p = 0.029). Conclusion: A clinically meaningful 6 MWD improvement may be elicited by services provided by BBFS in people with ND. Overall, the benefits appear to be more evident in members who attended the BBFS for at least 80% of the recommended visits and those who were in the early stage of their ND diagnosis.

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

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

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

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

A preference for quality: Australian general public's willingness to pay for home and residential aged care.

In Australia and many other countries internationally, aged care services are provided to older people in their own homes or residential care facilities. The majority of these services are funded by the federal government using taxpayer contributions from the general public. However, the monetary value Australians place on aged care services, and the factors that predict this value, have not been examined. We, therefore, sought to determine the general public's willingness to pay (WTP) for aged care services and examine which factors influence this WTP. A cross-sectional contingent valuation survey was administered to a nationally representative cohort of 10,285 Australians between September and October 2020 from the general population aged 18 years and over. Respondents were asked to indicate their WTP values for satisfactory and high-quality aged care services to be provided in the future. A two-part regression model was used to explain what factors explained variation in WTP. In total, 80% (61%) of respondents were willing to pay to access satisfactory (high) quality home care (counterpart figures for residential care were 64% (45%)). On average, respondents were willing to pay between $126 and $158 ($145 and $237) per week to receive satisfactory-quality (high-quality) home care and between $333 and $520 ($308 and $680) per week for satisfactory-quality (high-quality) residential care. Respondents were willing to pay an additional $120 per week on average to access high-quality aged care. Higher WTP values were generally associated with being younger, male, recent experience with aged care through a close family member accessing aged care and ability to pay. These results suggest general public support for payment of individual co-contributions to access aged care services in the future.