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Semi-structured interview guide for hereditary retinal diseases/acquired retinal diseases. (DOCX 19Â kb)

Semi-structured interview guide for hereditary retinal diseases/acquired retinal diseases. (DOCX 19Â kb)

Refereed/Peer-reviewed 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.

Background To assess the psychometric properties of the QIRC questionnaire and use it as an outcome measure in spectacle wearers attending an eye clinic in Malawi. MethodsParticipants who had uncorrected distance visual acuity of below 6/18 and improved to 6/9 or better with spectacles on both eyes were included in the study. The participants self-administered the Chichewa version of the QIRC questionnaire that was translated and culturally adapted for Malawian settings. Psychometric evaluation of the QIRC responses was carried out using the WinSteps software (Version 3.92.1; Winsteps, Chicago, IL) by applying the Andrich rating scale model of the Rasch analysis.Results One hundred and forty-three participants (mean age ± standard deviation, 27.64 ± 2.91; age range; 16 to 39 years; male, 51.7%) completed the QIRC. The Chichewa QIRC had satisfactory psychometric properties (Ordered response categories, Person separation index, 1.93; Item separation index, 3.42; Targeting 0.70) including excellent Rasch-model fit statistics (Infit and Outfit MnSq < 1.30 for all items). The QIRC score was not significantly associated with sex, age, magnitude of refractive error, occupation and status of previous spectacle wear (p> 0.05 for all). The QIRC scores negatively correlated with uncorrected visual acuity (in logMAR) in the better eye (spearman’s rho=-0.34, p < 0.001).ConclusionsThe translated and culturally adapted version of the QIRC Questionnaire had satisfactory psychometric properties to measure the refractive error-specific quality of life in Malawi. It performed well as an outcome measure of spectacle wear. Key words: validation, quality of life, Rasch analysis, spectacles, Malawi

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.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.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.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.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.

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.

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. Refereed/Peer-reviewed

Objectives To (1) use an elastic net (EN) algorithm to derive a frailty measure from a national aged care eligibility assessment program; (2) compare the ability of EN-based and a traditional cumulative deficit (CD) based frailty measures to predict mortality and entry into permanent residential care; (3) assess if the predictive ability can be improved by using weighted frailty measures. Materials and Methods A Cox proportional hazard model based EN algorithm was applied to the 2003–2013 cohort of 903 996 participants for selecting items to enter an EN based frailty measure. The out-of-sample predictive accuracy was measured by the area under the curve (AUC) from Cox models fitted to 80% training and validated on 20% testing samples. Results The EN approach resulted in a 178-item frailty measure including items excluded from the 44-item CD-based measure. The EN based measure was not statistically significantly different from the CD-based approach in terms of predicting mortality (AUC 0.641, 95% CI: 0.637–0.644 vs AUC 0.637, 95% CI: 0.634–0.641) and permanent care entry (AUC 0.626, 95% CI: 0.624–0.629 vs AUC 0.627, 95% CI: 0.625–0.63). However, the weighted EN based measure statistically outperforms the weighted CD measure for predicting mortality (AUC 0.774, 95% CI: 0.771–0.777 vs AUC 0.757, 95% CI: 0.754–0.760) and permanent care entry (AUC 0.676, 95% CI: 0.673–0.678 vs AUC 0.671, 95% CI: 0.668–0.674). Conclusions The weighted EN and CD-based measures demonstrated similar prediction performance. The CD-based measure items are relevant to frailty measurement and easier to interpret. We recommend using the weighted and unweighted CD-based frailty measures.

Refereed/Peer-reviewed 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% and2015: 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 healthcare 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 healthcare needs in aged care settings. 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.

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.

Purpose The purpose of this study was to assess whether a Chinese translated version of the 33-item Indian Vision Function Questionnaire (IND-VFQ-33) forms a valid measurement scale and to evaluate its psychometric properties based on the method of successive dichotomizations (MSD). Methods The English version of the IND-VFQ-33 was translated, back translated, and cross-culturally adapted for use in China. It was interviewer administered to patients with cataracts. MSD, a polytomous Rasch model that estimates ordered thresholds, was used to assess and optimize psychometric properties of the overall scale and three subscales separately. Results One hundred and seventy-nine patients provided complete responses. After the removal of 2 misfitting items, a revised 31-item overall scale demonstrated adequate precision (person reliability [PR] = 0.92) and no misfitting items. The general functioning subscale fit the MSD model well after removing two misfitting items. The psychosocial impact subscale and the visual symptoms subscale were not considered further due to poor measurement precision. After addressing psychometric deficiencies, a 31-item overall scale (IND-VFQ-31-CN) and a 19-item general functioning subscale (IND-VFQ-GF-19-CN) were developed. Conclusions The original IND-VFQ-33 required re-engineering to form valid measures for use in China. The revised overall scale and general functioning subscale demonstrated adequate MSD based psychometric properties. Translational relevance The revised IND-VFQ-33 is a valid patient-reported outcome assessment for Chinese patients with cataract based on MSD analysis.

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 inincidence 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%), Australiaborn (≥ 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. Refereed/Peer-reviewed

Purpose: Evaluate efficiency, precision, and validity of RetCAT, which comprises ten diabetic retinopathy (DR) quality of life (QoL) computerized adaptive tests (CATs). Methods: In this cross-sectional clinical study, 183 English and/or Mandarin-speaking participants with DR (mean age ± standard deviation [SD] 56.4 ± 11.9 years; 38% proliferative DR [worse eye]) were recruited from retinal clinics in Singapore. Participants answered the RetCAT tests (Symptoms, Activity Limitation, Mobility, Emotional, Health Concerns, Social, Convenience, Economic, Driving, and Lighting), which were capped at seven items each, and other questionnaires, and underwent eye tests. Our primary evaluation focused on RetCAT efficiency (i.e. standard error of measurement [SEM] ± SD achieved and time needed to complete each CAT). Secondary evaluations included an assessment of RetCAT's test precision and validity Results: Mean SEM across all RetCAT tests was 0.351, ranging from 0.272 ± 0.130 for Economic to 0.484 ± 0.130 for Emotional. Four tests (Mobility, Social, Convenience, and Driving) had a high level of measurement error. The median time to take each RetCAT test was 1.79 minutes, ranging from 1.12 (IQR [interquartile range] 1.63) for Driving to 3.28 (IQR 2.52) for Activity Limitation. Test precision was highest for participants at the most impaired end of the spectrum. Most RetCAT tests displayed expected correlations with other scales (convergent/divergent validity) and were sensitive to DR and/or vision impairment severity levels (criterion validity) Conclusions: RetCAT can provide efficient, precise, and valid measurement of DR-related QoL impact. Future application of RetCAT will employ a stopping rule based on SE rather than number of items to ensure that all tests can detect meaningful differences in person abilities. Responsiveness of RetCAT to treatment interventions must also be determined Translational Relevance: RetCAT may be useful for measuring the patient-centered impact of DR severity and disease progression and evaluating the effectiveness of new therapies Refereed/Peer-reviewed

Purpose Evidence surrounding utilities for health states, derived either directly from the application of preference-based valuation methods or indirectly from the application of preference-based quality of life instruments, is increasingly being utilised to inform the cost-effectiveness of child health interventions. Proxy (parent or health professional) assessments are common in this area. This study sought to investigate the degree of convergence in childhood utilities generated directly or indirectly within dyad child and proxy assessments. Methods A systematic literature review was conducted following PRISMA guidelines. A comprehensive literature search strategy conducted across six search engines (PubMed, Embase, Web of Science, PsychoINFO, EconLit, CINAHL and Cochrane Library). Original peer-reviewed articles that reported utilities derived directly or indirectly using simultaneous dyad child and proxy assessments were extracted. Mean and median utilities, correlation coefficients and levels of agreement were extracted, catalogued and assessed. Results A total of 35 studies that reported utilities for two or more respondent types were identified. Of these, 29 studies reported dyad childhood self-report and proxy utilities whilst six studies reported levels of agreement and/or correlations only without documenting overall utilities. Proxy assessment was most often conducted by parents with the HUI3 representing the most commonly applied instrument across a range of health conditions. The utilities derived from child and parent proxy assessment were bidirectional with parental proxies tending to underestimate and health professional proxies tending to overestimate relative to child self-reports. Inter-rater agreement between child self-reports and parent-proxy reports were poorer for more subjective attributes (cognition, emotion and pain), relative to physical attributes (mobility, self-care, speech, vision) of health-related quality of life. Conclusions Childhood utilities derived from children or proxies are not interchangeable. The choice of self or proxy assessor may have potentially significant implications for economic evaluations of child health interventions.