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

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

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

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

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.

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.

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.

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 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.

Utilisation of general practice health assessments around an aged care assessment is associated with lower mortality risk in older Australians.

OBJECTIVE: (i) to describe the general practitioner utilisation of health assessments, management plans, coordination of team care arrangements and medication review item numbers within 6 months of an aged care eligibility assessment for home care packages (HCP) and (ii) investigate the impact of health assessments on the risk of mortality and entry into permanent residential aged care (PRAC) of individuals accessing HCP. DESIGN AND SETTING: retrospective cohort study utilising data from the Registry of Senior Australians (ROSA) was conducted. SUBJECTS: 75,172 individuals aged ≥75 years who received HCP between 2011 and 2015. OUTCOME MEASURE: for objective 1: the use of comprehensive assessments (Medicare Benefits Schedule (MBS) items 705 or 707), management plans (MBS 721), coordination of team care arrangements (MBS 723), and medication reviews (MBS 900). For objective 2: time to death and entry into PRAC. RESULTS: of the 75,172 individuals, 28.2% (95% confidence interval (CI): 27.8-8.5%) had comprehensive assessments, 36.7% (95% CI: 36.3-37.0%) had management plans, 33.0% (95% CI: 32.7-33.3%) received coordination of team care arrangements and 5.4% (95% CI: 5.2-5.5%) had medication reviews. Individuals with a comprehensive assessment had a 5% lower risk of mortality (adjusted hazard ratio (aHR), 95% CI = 0.95, 0.92-0.98) but 5% higher risk of transition to PRAC (adjusted subdistribution HRs, 95% CI = 1.05, 1.02-1.08) compared to those who did not have these services. CONCLUSION: the utilisation of health assessments was associated with a lower risk of mortality. There is an opportunity for increased use of item numbers in frailer individuals.

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.

Does non-strabismic amblyopia affect the quality of life of adults? Findings from a qualitative study.

PURPOSE: While much is known about the psychosocial impacts of strabismus, little is known about the effects of non-strabismic amblyopia on quality of life (QoL). The aim of this study was to explore the long-term impacts of anisometropic amblyopia. METHODS: A phenomenological qualitative investigation was carried out on a sample of adults with anisometropic amblyopia. Subjects participated in in-depth telephone interviews and described how their eye condition affected different aspects of their life. The interviews were audio-recorded, transcribed verbatim and analysed iteratively to form emergent themes. RESULTS: Sixteen participants took part in the study (median age: 21.5 years; range: 18-36 years; 11 male and 5 female). Six themes emerged: (1) symptoms experienced by participants, (2) concerns and apprehensions, (3) emotional impacts, (4) activity limitations, (5) hassle and inconveniences and (6) economic and career implications. Symptoms reported by participants ranged from glare to difficulty concentrating. They were extremely concerned about the safety of their better eye and lived with several doubts and anxieties. Negative emotions such as grief and disappointment due to eye care negligence in childhood was apparent. Guilt and regretful feelings were present in those who did not comply with past treatment. Participants expressed several limitations in driving, reading, mobility (e.g., using stairs) and tasks requiring high resolution. Reported inconveniences associated with coping with their eye condition included having to travel across the country in search of a cure for their amblyopia. Economic impacts ranged from costs associated with accessing eye care and management to career choices being compromised. CONCLUSION: Lived experiences of people with anisometropic amblyopia indicate that the QoL impacts are multifaceted and substantial, even in the absence of strabismus. The results have the potential to influence patient-practitioner relationship by opening newer horizons to communication and care while managing adult amblyopes.

Item banks for measurement of refractive error-specific quality of life.

PURPOSE: To evaluate the psychometric properties of refractive error-specific quality of life (QoL) item banks and assess their performance using computerised adaptive testing (CAT) simulations. METHODS: In this cross-sectional study a 392-item questionnaire, grouped under 11 QoL domains, was interviewer-administered to 305 people with refractive error [mean age ± S.D., 30.5 ± 14.1 (range (18 to 83) years; male, 50.5%; mean ± S.D. spherical equivalent refractive error -2.4 ± 2.9 (range: -15.0 to +11.0) Dioptres; spectacles (n = 257), contact lens (n = 37), refractive surgery (n = 25), uncorrected refractive error (n = 57)]. Rasch analysis was conducted on each QoL domain using the Andrich rating scale model to investigate parameters including response category functioning, person- and item-reliability, infit and outfit statistics, unidimensionality, targeting, differential item functioning and local item dependency. The resulting item banks underwent CAT simulations in 1,000 cases with 'high' and 'moderate' precision stopping rules. RESULTS: Rasch analysis iterations resulted in 13 refractive error-specific item banks (Convenience, Health concerns, Economic, Activity limitation, Mobility, Emotional, Social, Visual symptoms frequency, Visual symptoms severity, Visual symptoms bothersome, Comfort symptoms frequency, Comfort symptoms severity and Comfort symptoms bothersome), containing a total of 366 items. The item banks had good psychometric properties including satisfactory measurement precision, infit and outfit statistics and unidimensionality. In CAT simulations, the mean number of items required to achieve high and moderate measurement precision was 9.4 and 4.7, respectively. CONCLUSION: Overall, refractive error-specific QoL item banks show promise in their ability to comprehensively and precisely evaluate a range of quality of life parameters. These items banks when administered using a CAT system offer unique outcome tools for implementation in clinical trials, healthcare and research.

Development and validation of a frailty index based on Australian Aged Care Assessment Program data.

OBJECTIVES: To develop and validate a frailty index, derived from aged care eligibility assessment data. DESIGN: Retrospective cohort study; analysis of the historical national cohort of the Registry of Senior Australians (ROSA). PARTICIPANTS: 903 996 non-Indigenous Australians aged 65 years or more, living in the community and assessed for subsidised aged care eligibility during 2003-2013. MAIN OUTCOME MEASURES: 44-item frailty index; summary statistics for frailty index score distribution; predictive validity with respect to mortality and entry into permanent residential aged care during the five years after assessment. RESULTS: The mean frailty index score during 2003-2013 was 0.20 (SD, 0.07; range, 0-0.41); the proportion of assessed older people with scores exceeding 0.20 increased from 32.1% in 2003-2005 to 75.0% in 2012-2013. The risks of death and entry into permanent residential aged care at one, three and five years increased with frailty index score level (at one year, high [over 0.35] v low scores [under 0.05]: hazard ratio for death, 5.99; 95% CI, 5.69-6.31; for entry into permanent residential aged care, 8.70; 95% CI, 8.32-9.11). The predictive validity (area under the receiver operating characteristic curve) of Cox proportional hazard models including age, sex, and frailty index score was 0.64 (95% CI, 0.63-0.64) for death and 0.63 (95% CI, 0.62-0.63) for entry into permanent residential aged care within one year of assessment. CONCLUSIONS: We used Australian aged care eligibility assessment program data to construct and validate a frailty index. It can be employed in aged care research in Australia, but its application to aged care planning requires further investigation.

Optimizing measurement of vision-related quality of life: a computerized adaptive test for the impact of vision impairment questionnaire (IVI-CAT).

PURPOSE: To compare the results from a simulated computerized adaptive test (CAT) for the 28-item Impact of Vision Impairment (IVI) questionnaire and the original paper-pencil version in terms of efficiency (main outcome), defined as percentage item reduction. METHODS: Using paper-pencil IVI data from 832 participants across the spectrum of vision impairment, item calibrations of the 28-item IVI instrument and its associated 20-item vision-specific functioning (VSF) and 8-item emotional well-being (EWB) subscales were generated with Rasch analysis. Based on these calibrations, CAT simulations were conducted on 1000 cases, with 'high' and 'moderate' precision stopping rules (standard error of measurement [SEM] 0.387 and 0.521, respectively). We examined the average number of items needed to satisfy the stopping rules and the corresponding percentage item reduction, level of agreement between person measures estimated from the full IVI item bank and from the CAT simulations, and item exposure rates (IER). RESULTS: For the overall IVI-CAT, 5 or 9.7 items were required, on average, to obtain moderate or high precision estimates of vision-related quality of life, corresponding to 82.1 and 65.4% item reductions compared to the paper-pencil IVI. Agreement was high between the person measures generated from the full IVI item bank and the IVI-CAT for both the high precision simulation (mean bias, - 0.004 logits; 95% LOA - 0.594 to 0.587) and moderate precision simulation (mean bias, 0.014 logits; 95% LOA - 0.828 to 0.855). The IER for the IVI-CAT in the moderate precision simulation was skewed, with six EWB items used > 40% of the time. CONCLUSION: Compared to the paper-pencil IVI instrument, the IVI-CATs required fewer items without loss of measurement precision, making them potentially attractive outcome instruments for implementation into clinical trials, healthcare, and research. Final versions of the IVI-CATs are available.

Trends in the utilisation of aged care services in Australia, 2008-2016.

BACKGROUND: Aged care support services in Australia are delivered through home care packages, permanent residential care, respite care and transition care. This study aimed to determine age and gender specific incidence rates of aged care service utilisation in Australia between 2008-09 and 2015-16. METHODS: This is a population-based epidmiological study of people accessing aged care services in Australia. The trends and characteristics of people (over the age of 65 years old) accessing aged care services in Australia were evaluated, using data (2008-09 and 2015-16) from the Australian Institute of Health and Welfare and Australian Bureau of Statistics. The yearly utilisation incidence rates (per 1000 people) per service type were calculated and changes in incidence rate ratios (IRR) of service utilisation for the study period were estimated using Poisson regression models. RESULTS: The proportion of older Australians aged ≥65 years who used aged care services remained similar between 2008-09 (5.4%, N = 208,247) and 2015-16 (5.6%, N = 248,669). However, the incidence use of specific services changed during the study period. Specifically, admissions into permanent residential care decreased (from 23.8/1000 people in 2008-09 to 19.6/1000 in 2015-16, at a IRR of 0.84/year, p < 0.001) but increased for transition care (from 4.3/1000 in 2008-09 to 6.6/1000 in 2015-16, at a IRR of 1.57/year, p < 0.001) and home care packages (from 8.04/1000 in 2008-09 to 12.0/1000 per 1000 in 2015-16, at a IRR of 1.52/year, p < 0.001). Between 2008-09 and 2015-16, the greatest changes in IRR were observed in males aged 80-89 years accessing transition care (IRR = 1.68/year, p < 0.001). A higher proportion of people aged between 80-89 years (≥45%), females (≥60%), Australia born (≥ 60%) and English speakers (≥80%) used all the service types. CONCLUSIONS: Patterns of service utilisation for aged care services changed over the study period with a decrease in incidence of individuals accessing permanent residential care but increased for other service types. This finding reflects changes in attitudes regarding ageing in place and policies. These findings are helpful to inform key stakeholders on service planning to further improve quality of the aged-care services in Australia.

Psychometric Properties of an Indian Translation of the Vision-related Activity Limitation Item Bank in Cataract.

SIGNIFICANCE: The Indian translated and culturally adapted version of the vision-related activity limitation (VRAL) item bank is a validated instrument to assess the difficulty in performing daily activities by cataract patients and can also be used to capture self-reported changes in ability to perform daily activities after cataract surgery. PURPOSE: The purpose of this study was to document (a) translation, cross-cultural adaptation of VRAL item bank into an Indian language, and (b) its validation using Rasch analysis in a South Indian cataract population. METHODS: At the first stage, a translated Indian version of VRAL item bank was produced using recommended procedures. At the second stage, Rasch analysis was performed to investigate its psychometric properties in 787 cataract patients (mean age, 58.2 years; mean ± SD visual acuity [logMAR], 1.19 ± 0.96 at baseline in eye for surgery) including comparison with the original version. RESULTS: Post-translation equivalence of meaning was achieved, but some English phrases required cross-cultural adaptation. Subsequently, all items were appropriate for the Indian culture, and VRAL item bank demonstrated excellent measurement precision (7.39). Dimensionality assessment suggested that VRAL construct may contain other dimensions such as self-care and visual search, and mobility. Self-care and visual search formed a unidimensional measure but was highly correlated with main VRAL dimension, and the removal of its items weakened precision of the main VRAL dimension measurement. Taken together, evidence favored retaining self-care and visual search items in a larger VRAL item bank. Mobility subscale lacked adequate measurement precision, so it was not examined further; again, items were retained in VRAL scale because they strengthened its measurement properties. Majority of items (99%) did not demonstrate notable differential item functioning (>1.0 logit) by presenting visual acuity (median, 0.20 logMAR) in the better-seeing eye. CONCLUSIONS: Items in the translated Indian VRAL item bank measure the same construct as the English version and fulfilled the psychometric requirements for use in cataract patients.

Development and Psychometric Assessment of Novel Item Banks for Hereditary Retinal Diseases.

SIGNIFICANCE: This study develops psychometrically valid item banks across 10 areas of quality of life (QoL) specific to people with hereditary retinal diseases, which will enable clinicians and researchers to explore the impact of hereditary retinal diseases across all aspects of QoL. PURPOSE: The purpose of this study was to assess the psychometric properties of hereditary retinal disease QoL item banks using Rasch analysis and demonstrate the effectiveness of a computerized adaptive testing (CAT) system in obtaining precise measurement of QoL using only a few items. METHODS: The hereditary retinal disease item banks were answered by 233 participants (median age, 58 years; range, 18 to 94 years; female participants, 59%). The hereditary retinal disease item banks cover 10 QoL domains: activity limitation, mobility, emotional, social, convenience, economic, health concerns, visual symptoms, ocular comfort symptoms, and general symptoms. Rasch analysis assessed the psychometric properties of the 10 item banks and provided item calibrations for the development of CAT. Computerized adaptive testing simulations were performed to calculate the average number of items required to gain precise measurement of each QoL domain. RESULTS: The convenience, economic, visual symptoms, and the social domains formed unidimensional scales. However, the activity limitation and health concerns domains demonstrated multidimensionality and required major modifications to resolve this, which resulted in four new QoL domains, namely, reading, driving, lighting, and concerns about the disease progression. In total, 10 item banks underwent CAT simulation testing, which indicated that 8 to 12 items were required to gain precise measurement of each QoL domain. CONCLUSIONS: We have developed 10 psychometrically valid item banks to measure the QoL domains relevant to people with hereditary retinal diseases. On average, only 5 and 10 items were required to gain measurement at moderate and high precision, respectively.

Functional limitations recognised by adults with amblyopia and strabismus in daily life: a qualitative exploration.

PURPOSE: Patients' perceptions about the functional impact of amblyopia and strabismus in daily life have not been explored extensively. Therefore, this study aimed to explore the lived experiences of adults with these conditions and understand the functional limitations they face in their day-to-day life. METHODS: A qualitative study design was adopted. Participants over 18 years of age, with a primary diagnosis of amblyopia (with or without strabismus) were recruited from the community and various eye care practices in South Australia and Victoria, Australia. Participants took part in either focus group discussions or individual interviews and described the functional limitations they experienced in their daily life due to their eye condition. These sessions were audio recorded, transcribed verbatim, coded inductively, and analysed iteratively to form emergent themes. RESULTS: Thirty-seven adult participants took part in the study: 23 (62%) had strabismic amblyopia; 5 (14%) anisometropic amblyopia;, 7 (19%) combined-mechanism amblyopia; and 2 (5%) deprivational amblyopia. Their median age was 54 years (range: 21-82 years) and 19 (51%) were female. Participants reported several challenges in performing everyday tasks such as driving (e.g. judging distances, changing lanes), reading (e.g. fine print, reading for prolonged time) and sports (e.g. catching a ball). They also articulated trouble in navigating safely (e.g. using stairs, bumping into objects), performing work-tasks (e.g. taking longer than peers to complete tasks) and other routine tasks (e.g. chopping vegetables with care). CONCLUSIONS: Several functional limitations were encountered by adults living with amblyopia and strabismus. Participants recognised these limitations in their normal day-to-day life and related the challenges they faced to symptoms associated with their eye condition. By presenting rich in-depth qualitative data, the paper demonstrates qualitative evidence of the functional impacts associated with amblyopia and strabismus.

Developing an item bank to measure the coping strategies of people with hereditary retinal diseases.

PURPOSE: Our understanding of the coping strategies used by people with visual impairment to manage stress related to visual loss is limited. This study aims to develop a sophisticated coping instrument in the form of an item bank implemented via Computerised adaptive testing (CAT) for hereditary retinal diseases. METHODS: Items on coping were extracted from qualitative interviews with patients which were supplemented by items from a literature review. A systematic multi-stage process of item refinement was carried out followed by expert panel discussion and cognitive interviews. The final coping item bank had 30 items. Rasch analysis was used to assess the psychometric properties. A CAT simulation was carried out to estimate an average number of items required to gain precise measurement of hereditary retinal disease-related coping. RESULTS: One hundred eighty-nine participants answered the coping item bank (median age = 58 years). The coping scale demonstrated good precision and targeting. The standardised residual loadings for items revealed six items grouped together. Removal of the six items reduced the precision of the main coping scale and worsened the variance explained by the measure. Therefore, the six items were retained within the main scale. Our CAT simulation indicated that, on average, less than 10 items are required to gain a precise measurement of coping. CONCLUSIONS: This is the first study to develop a psychometrically robust coping instrument for hereditary retinal diseases. CAT simulation indicated that on an average, only four and nine items were required to gain measurement at moderate and high precision, respectively.

Constructing Item Banks for Measuring Quality of Life in Refractive Error.

SIGNIFICANCE: Existing patient-reported outcome instruments in refractive error are paper-based questionnaires. They are not comprehensive and psychometrically robust. This study has identified the content of the refractive error-specific item banks that aim to provide comprehensive and scientific measurement of refractive error-specific quality of life. PURPOSE: The purpose of this study was to identify minimally representative, optimally informative, and efficient sets of items for measuring quality of life in people with refractive error. METHODS: First, items were identified from existing patient-reported outcome instruments. Second, items were developed from qualitative studies with people with refractive error (48 and 101 in-depth interviews in Australia and Nepal, respectively). Third, classification and selection of items were done based on a set of systematic criteria using an iterative process of binning and winnowing. The resulting items underwent cognitive testing with people with refractive error in Australia and in Nepal. Each step was guided by an expert panel consensus. RESULTS: We retrieved 792 items from the existing patient-reported outcome instruments. From the interviews conducted in Australia, a total of 2367 comments were coded into 807 initial items. Similarly, from the interviews conducted in Nepal, 3477 comments were coded into 914 initial items. After binning and winnowing, followed by cognitive testing, a final set of items comprising 337 items for the Item-pool (Australia) and 308 items for the Item-pool (Nepal), both spanning 12 domains, was obtained. Forty-seven percent of items were common across the two item pools. In the Item-pool (Nepal), 65% items were common for corrected and uncorrected refractive error. CONCLUSIONS: We identified the content of two different sets of item banks to comprehensively measure the impact of refractive error on quality of life for people in Australia and Nepal, which may be applicable to high-income country settings and low- and middle-income country settings, respectively. Future work aims to develop computer-adaptive testing system to administer the item banks, resulting in useful measurement tools for researchers, clinicians, and policy planners.