European adaptation of the Harmonized Cognitive Assessment Protocol: Methodological lessons learned from SHARE‐HCAP

Abstract

AbstractBackgroundAlzheimer’s disease and related dementias pose a major epidemiological challenge worldwide. A key impediment to dementia research is the availability of internationally comparable cognitive assessments that are socio‐culturally adapted and language appropriate. The Survey of Health, Ageing and Retirement in Europe‐ Harmonized Cognitive Assessment Protocol (SHARE‐HCAP) study aims to use multistage translation and pre‐statistical harmonization procedures to develop an in‐depth neuropsychological battery that assesses cognition in a population‐based survey administered across Continental Europe.MethodSHARE‐HCAP will assess cognitive functioning using the HCAP – an hour‐long neuropsychological test battery and informant interview developed for the Health and Retirement Study and similar population‐based ageing surveys. The survey will be implemented in five European countries (Czech Republic, Denmark, France, Germany, Italy) in a stratified study sample of 2,500 SHARE panel respondents. SHARE‐HCAP’s adaptation procedures include the a) development of socio‐culturally appropriate recruitment strategies and interview techniques, b) translation of HCAP content, including study documents, test materials, and informant interview by a team of multi‐lingual researchers and clinicians, c) pre‐statistical harmonization of the HCAP test battery, including administration and scoring, and d) development of comprehensive training of local survey interviewers who were inexperienced in cognitive assessment. SHARE‐HCAP adaptations were assessed in two small‐scale preliminary data collections. Descriptive statistical analyses of neuropsychological test scores were conducted.ResultTo date, we have developed lingo‐culturally adapted HCAP documents (e.g., informed consent, recruitment materials), and neuropsychological test content and interviews for five SHARE countries. Descriptive statistics suggest that SHARE‐HCAP pre‐test data behave similarly to neuropsychological test data of two English‐language HCAP studies (i.e., USA and England).ConclusionAs the first HCAP sub‐study conducted cross‐nationally, SHARE‐HCAP’s cultural and linguistic adaptations can provide valuable insights into the collection of cognitive health data in population‐based surveys in multi‐national contexts. Preliminary results support the comparability of SHARE‐HCAP to English‐language HCAP batteries. Assessing cognitive functioning in population studies, such as SHARE‐HCAP, leverages the international variation of health and life circumstances to identify the bio‐medical and socio‐economic conditions that contribute to cognitive health over the life‐course.