Estimating the Prevalence of Dementia in New Zealand Using Capture-Recapture Analysis on Routinely Collected Health Data.

OBJECTIVES: Community based dementia prevalence studies are expensive and resource intensive. Aotearoa New Zealand (NZ) has never had a community based dementia prevalence study representing all major ethnic groups. In recent years, dementia prevalence estimates have been derived from routinely collected health data but issues of underdiagnosis and undercoding limit their utility. Capture-recapture techniques can estimate the number of dementia cases missing from health datasets by modelling the ascertained overlaps between linked data sources. METHODS: Three routinely collected national health data sets-interRAI, Public hospital discharges, and Pharmaceuticals-were linked and all prevalent cases of dementia in NZ for the year 1 January 2021-31 December 2021 were identified. Capture-recapture analysis fitted eight loglinear models to the data, with the best fitting model used to estimate the number of prevalent cases missing from all three datasets. RESULTS: We estimated that almost half (47.8%) of dementia cases are not present in any of the three datasets. Dementia prevalence increased from 3.7% to 7.1% (95% CI 6.9%-7.4%) in the NZ 60+ population and from 4.9% to 9.2% (95% CI 8.9%-9.6%) in the NZ 65+ population when missing cases were included. Estimates of missing cases were significantly higher (p < 0.001) in Maori (49.2%), Pacific peoples (50.6%) and Asian (59.6%) compared to Europeans (46.4%). CONCLUSIONS: This study provides updated estimates of dementia prevalence in NZ and the proportion of undiagnosed dementia in NZ, highlighting the need for better access to dementia assessment and diagnosis.

National estimates from the Youth '19 Rangatahi smart survey: A survey calibration approach.

BACKGROUND: Significant progress has been made addressing adolescent health needs in New Zealand, but some areas, such as mental health issues remain, particularly for rangatahi Maori (indigenous Maori young people). Little is known about how contemporary Maori whanau (families) and communities influence health outcomes, health literacy and access to services. Previous nationally representative secondary school surveys were conducted in New Zealand in 2001, 2007 and 2012, as part of the Youth2000 survey series. This paper focuses on a fourth survey conducted in 2019 (https://www.youth19.ac.nz/). In 2019, the survey also included kura kaupapa Maori schools (Maori language immersion schools), and questions exploring the role of family connections in health and wellbeing. This paper presents the overall study methodology, and a weighting and calibration framework in order to provide estimates that reflect the national student population, and enable comparisons with the previous surveys to monitor trends. METHODS: Youth19 was a cross sectional, self-administered health and wellbeing survey of New Zealand high school students. The target population was the adolescent population of New Zealand (school years 9-13). The study population was drawn from three education regions: Auckland, Tai Tokerau (Northland) and Waikato. These are the most ethnically diverse regions in New Zealand. The sampling design was two-stage clustered stratified, where schools were the clusters, and strata were defined by kura schools and educational regions. There were four strata, formed as follows: kura schools (Tai Tokerau, Auckland and Waikato regions combined), mainstream-Auckland, mainstream-Tai Tokerau and mainstream-Waikato. From each stratum, 50% of the schools were randomly sampled and then 30% of students from the selected schools were invited to participate. All students in the kura kaupapa schools were invited to participate. In order to make more precise estimates and adjust for differential non-response, as well as to make nationally relevant estimates and allow comparisons with the previous national surveys, we calibrated the sampling weights to reflect the national secondary school student population. RESULTS: There were 45 mainstream and 4 kura schools included in the final sample, and 7,374 mainstream and 347 kura students participated in the survey. There were differences between the sampled population and the national secondary school student population, particularly in terms of sex and ethnicity, with a higher proportion of females and Asian students in the study sample than in the national student population. We calculated estimates of the totals and proportions for key variables that describe risk and protective factors or health and wellbeing factors. Rates of risk-taking behaviours were lower in the sampled population than what would be expected nationally, based on the demographic profile of the national student population. For the regional estimates, calibrated weights yield standard errors lower than those obtained with the unadjusted sampling weights. This leads to significantly narrower confidence intervals for all the variables in the analysis. The calibrated estimates of national quantities provide similar results. Additionally, the national estimates for 2019 serve as a tool to compare to previous surveys, where the sampling population was national. CONCLUSIONS: One of the main goals of this paper is to improve the estimates at the regional level using calibrated weights to adjust for oversampling of some groups, or non-response bias. Additionally, we also recommend the use of calibrated estimators as they provide nationally adjusted estimates, which allow inferences about the whole adolescent population of New Zealand. They also yield confidence intervals that are significantly narrower than those obtained using the original sampling weights.

On the analysis of two-phase designs in cluster-correlated data settings.

In public health research, information that is readily available may be insufficient to address the primary question(s) of interest. One cost-efficient way forward, especially in resource-limited settings, is to conduct a two-phase study in which the population is initially stratified, at phase I, by the outcome and/or some categorical risk factor(s). At phase II detailed covariate data is ascertained on a subsample within each phase I strata. While analysis methods for two-phase designs are well established, they have focused exclusively on settings in which participants are assumed to be independent. As such, when participants are naturally clustered (eg, patients within clinics) these methods may yield invalid inference. To address this, we develop a novel analysis approach based on inverse-probability weighting that permits researchers to specify some working covariance structure and appropriately accounts for the sampling design and ensures valid inference via a robust sandwich estimator for which a closed-form expression is provided. To enhance statistical efficiency, we propose a calibrated inverse-probability weighting estimator that makes use of information available at phase I but not used in the design. In addition to describing the technique, practical guidance is provided for the cluster-correlated data settings that we consider. A comprehensive simulation study is conducted to evaluate small-sample operating characteristics, including the impact of using naïve methods that ignore correlation due to clustering, as well as to investigate design considerations. Finally, the methods are illustrated using data from a one-time survey of the national antiretroviral treatment program in Malawi.