Development of the What Matters 2 Adults (WM2A) wellbeing measure for Aboriginal and Torres Strait Islander adults.

PURPOSE: As wellbeing is culturally bound, wellbeing measures for Aboriginal and Torres Strait Islander peoples must be culturally relevant and grounded in Aboriginal and Torres Strait Islander values and preferences. We describe the development of a nationally-relevant and culturally grounded wellbeing measure for Aboriginal and Torres Strait Islander adults: the What Matters to Adults (WM2A) measure. METHODS: We used a mixed methods approach to measure development, combining Indigenist methodologies and psychometric methods. Candidate items were derived through a large national qualitative study. Think-aloud interviews (n = 17) were conducted to assess comprehension, acceptability, and wording of candidate items. Two national surveys collected data on the item pool (n = 312, n = 354). Items were analysed using exploratory factor analysis (EFA), and item response theory (IRT) to test dimensionality, local dependence and item fit. A Collaborative Yarning approach ensured Aboriginal and Torres Strait Islander voices were privileged throughout. RESULTS: Fifty candidate items were developed, refined, and tested. Using EFA, an eight factor model was developed. All items met pre-specified thresholds for maximum endorsement frequencies, and floor and ceiling effects; no item redundancy was identified. Ten items did not meet thresholds for aggregate adjacent endorsement frequencies. During Collaborative Yarning, six items were removed based on low factor loadings (<0.4) and twelve due to conceptual overlap, high correlations with other items, endorsement frequencies, and/or low IRT item level information. Several items were retained for content validity. The final measure includes 32 items across 10 domains (Balance & control; Hope & resilience; Caring for others; Culture & Country; Spirit & identity; Feeling valued; Connection with others; Access; Racism & worries; Pride & strength). CONCLUSIONS: The unique combination of Indigenist and psychometric methodologies to develop WM2A ensures a culturally and psychometrically robust measure, relevant across a range of settings and applications.

Assessing the construct validity of the Quality-of-Life-Aged Care Consumers (QOL-ACC): an aged care-specific quality-of-life measure.

PURPOSE: To evaluate the construct (convergent and known group) validity of the Quality-of-Life-Aged Care Consumer (QOL-ACC), an older-person-specific quality-of-life measure designed for application in quality assessment and economic evaluation in aged care. METHODS: Convergent validity was assessed by examining relationships with other validated preference-based measures (EQ-5D-5L, ASCOT), quality of aged care experience (QCE-ACC) and life satisfaction (PWI) through an online survey. Known-group validity was assessed by testing the ability to discriminate varying levels of care needs, self-reported health and quality of life. RESULTS: Older people (aged ≥ 65 years) receiving community-aged care (N = 313) responded; 54.6% were female, 41.8% were living alone and 56.8% were receiving higher-level care. The QOL-ACC and its six dimensions were low to moderately and significantly correlated with the EQ-5D-5L (correlation co-efficient range, ρ = 0.39-0.56). The QOL-ACC demonstrated moderate and statistically significant correlations with ASCOT (ρ = 0.61), the QCE-ACC (ρ = 0.51) and the PWI (ρ = 0.70). Respondents with poorer self-reported health status, quality of life and/or higher-level care needs demonstrated lower QOL-ACC scores (P < 0.001), providing evidence of known-group validity. CONCLUSIONS: The study provides evidence of the construct validity of the QOL-ACC descriptive system. A preference-weighted value set is currently being developed for the QOL-ACC, which when finalised will be subjected to further validation assessments.

Developing preference-based measures for diabetes: DHP-3D and DHP-5D.

AIMS: The aim of this study was to develop two diabetes-specific preference-based measures [the Diabetes Health Profile-3 Dimension (DHP-3D) and the Diabetes Health Profile-5 Dimension (DHP-5D)] for use in the calculation of Quality Adjusted Life Years, a key outcome in economic evaluation. These measures were based on the non-preference-based instrument the Diabetes Health Profile. METHODS: For DHP-3D, psychometric and Rasch analyses were used to develop a health state classification system based on the Diabetes Health Profile-18 (DHP-18). The DHP-5D added two dimensions to the DHP-3D to extend the range of impacts measured. Each classification system was valued by 150 general public respondents in the United Kingdom using Time Trade Off (TTO). Multivariate regression was used to estimate utility value sets. The matched dimensions across each measure were compared using z-score tests. RESULTS: The DHP-3D included three dimensions defined as mood, eating and social limitations, and the DHP-5D added dimensions defined as hypoglycaemic attacks and vitality. For both, the random effects generalized least squares regression model produced consistent value sets, with the DHP-3D and DHP-5D ranging from 0.983 (best state) to 0.717 (worst state), and 0.979 to 0.618 respectively. The addition of the two extra dimensions leads to significant differences for the more severe levels of each matched dimension. CONCLUSIONS: We have developed two diabetes-specific preference-based measures that, subject to psychometric assessment, can be used to provide condition-specific utility values to complement generic utilities from more widely validated measures such as the EuroQol-5 Dimension.

Development of DEMQOL-U and DEMQOL-PROXY-U: generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation.

BACKGROUND: Dementia is one of the most common and serious disorders in later life and the economic and personal cost of caring for people with dementia is immense. There is a need to be able to evaluate interventions in dementia using cost-effectiveness analyses, but the generic preference-based measures typically used to measure effectiveness do not work well in dementia. Existing dementia-specific measures can effectively measure health-related quality of life but in their current form cannot be used directly to inform cost-effectiveness analysis using quality-adjusted life-years as the measure of effectiveness. OBJECTIVES: The aim was to develop two brief health-state classifications, one from DEMQOL and one from DEMQOL-Proxy, to generate health states amenable to valuation. These classification systems consisted of items taken from DEMQOL and DEMQOL-Proxy so they can be derived from any study that has used these instruments. DATA SOURCES: In the first stage of the study we used a large, clinically representative sample aggregated from two sources: a sample of patients and carers attending a memory service in south London and a sample of patients and carers from other community services in south London. This included 644 people with a diagnosis of mild/moderate dementia and 689 carers of those with mild/moderate dementia. For the valuation study, the general population sample of 600 respondents was drawn to be representative of the UK general population. Households were sampled in urban and rural areas in northern England and balanced to the UK population according to geodemographic profiles. In the patient/carer valuation study we interviewed a sample of 71 people with mild dementia and 71 family carers drawn from a memory service in south London. Finally, the instruments derived were applied to data from the HTA-SADD (Study of Antidepressants for Depression in Dementia) trial. REVIEW METHODS: This was a complex multiphase study with four linked phases: phase 1 - derivation of the health-state classification system; phase 2 - general population valuation survey and modelling to produce values for every health state; phase 3 - patient/carer valuation survey; and phase 4 - application of measures to trial data. RESULTS: All four phases were successful and this report details this development process leading to the first condition-specific preference-based measures in dementia, an important new development in this field. LIMITATIONS: The first limitation relates to the lack of an external data set to validate the DEMQOL-U and DEMQOL-Proxy-U classification systems. Throughout the development process we have made decisions about which methodology to use. There are other valid techniques that could be used and it is possible to criticise the choices that we have made. It is also possible that the use of a mild to moderate dementia sample has resulted in classification systems that do not fully reflect the challenges of severe dementia. CONCLUSION: The results presented are sufficiently encouraging to recommend that the DEMQOL instruments be used alongside a generic measure such as the European Quality of Life-5 Dimensions (EQ-5D) in future studies of interventions in dementia as there was evidence that they can be more sensitive for patients at the milder end of disease and some limited evidence that the person with dementia measure may be able to reflect deterioration. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

Persistent neonatal hyperinsulinism.

Over a 3-year period, the diagnosis of persistent neonatal hyperinsulinism (PNH) was made in seven infants, from an unselected cohort of 18,726 births, all of Saudi Arabian origin. Thus the incidence of PNH was one in 2,675 births. The high incidence, associated consanguinity, and occurrence in siblings suggest that PNH may be inherited as an autosomal recessive disorder.

Concentrations of metals in mink and other mammals from Washington and Idaho.

From 1981 to 1983, concentrations of metals were determined in mink Mustela vison, muskrats Ondatra zibethica, and small mammals at one contaminated site in Idaho and at two less contaminated sites in Idaho and Washington. The highest concentrations of Pb and Cd occurred in samples from the Coeur d'Alene River system near or downstream from an extensive mining-smelting complex in northern Idaho. Maximum concentrations of Pb in the liver of a mink (22 microg g(-1)) and in pooled liver samples of both voles (Microtus spp., 5.8 microg g(-1)) and deer mice (Peromyscus maniculatus, 10.5 microg g(-1)) were higher than those inducing serious problems, including mortality, in experimental mammals on Pb-contaminated diets. Concentrations of Cd, Cu, Hg, and Zn were generally low. Declines in certain mammal populations have probably occurred in northern Idaho as a result of direct toxicity of metals and associated secondary effects on cover and food supply.

Pesticide, PCB, and lead residues and necropsy data for bald eagles from 32 states-1978-81.

In 1978-81, 293 bald eagles (Haliaeetus leucocephalus) from 32 states were necropsied and analyzed for organochlorine pesticides, polychlorinated biphenyls (PCB), and lead residues. DDE was found in all carcasses; PCB, DDD, trans-nonachlor, dieldrin and oxychlordane were next in order of percent frequency of detection. The median levels of DDE and PCB have declined when compared with previous collections. Five specimens contained high levels of dieldrin in their brains which may have contributed to their deaths. Seventeen eagles contained liver lead residues greater than 10 ppm and probably died of lead poisoning. Trauma and shooting are the most common causes of death.