Protocol for a scoping review of the collection, analysis and reporting of variables related to cultural and linguistic diversity in dementia clinical trials and cohort studies

Abstract

AbstractBackgroundEthnic minority communities and people living with dementia have been under‐represented in epidemiological studies. Concurrently, there are limited insights into how to analyse and report on a minimum set of variables related to cultural and linguistic diversity in such studies. In light of increased cultural and ethnic diversity in national populations, this review aims to investigate the collection, reporting and analysis of variables related to cultural and linguistic diversity in epidemiological dementia studies, and to identify best practice exemplars to inform recommendations for accurately capturing cultural diversity in future studiesMethodEmbase, PsycINFO, Medline, CENTRAL and CINAHL will be searched for peer‐reviewed studies published between January 2000 and January 2020. Selection criteria are: epidemiological dementia research studies (including clinical trials and cohort studies) focusing on cultural and ethnic minorities or cultural and ethnic difference, and undertaken in high‐income countries. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analyses) guidelines will be used to report findings.ResultResults will describe the variables related to cultural and linguistic diversity, the related measures used, how such variables are treated (e.g. categorical or continuous) and triangulated, what corrections are made (if any) for variables such as time lived in country of settlement, and how these are analysed to inform understanding of dementia among ethnic minorities in high‐income countries.ConclusionBased on these findings, best practice exemplars will be identified, and recommendations made for a minimum and consistent set of variables relating to ethnic diversity to be collected and reported. The study addresses methodological uncertainties around which variables to collect and how to bring them together in a robust analysis that accounts for the cultural and pathological heterogeneity often found among ethnic minority study participants living with dementia.Reference 1Australian Institute of Health and Welfare 2018. Older Australia at a glance. 2L. F., Barcenilla‐Wong, A. L., and Brijnath, B. 2019. Including ethnic and cultural diversity in dementia research. Medical Journal of Australia, 211, 345. 3World Bank Country and Lending groups.https://datahelpdesk.worldbank.org/knowledgebase/articles/906519#High_income. Accessed 14 January 2020.