Culturally adapting cognitive tests for ethnic minorities: an illustration using the Addenbrooke's Cognitive Examination III for British Urdu speakers
The majority of cognitive tests were developed for English speaking European populations, standardised on Caucasians. Within the UK, ethnic minorities are demonstrating higher rates of false positive and negative scores on these cognitive tests. This leads to a misdiagnosis and underdiagnosis of dementia respectively. This is attributed to bias that arises when the target populations differ from the population that assessments, including cognitive tests, were originally designed for. Over 864,000 individuals within the UK struggle to or cannot speak English and they are disadvantaged as these tests are dependent on English language recognition and ability. Translation is not enough as culture influences performance, including perception of test questions and responses to them. Therefore, ethnic minorities score lower on cognitive tests that differ in cultural context from the one they are familiar with. Thus, there is a need for culturally adapted cognitive tests for ethnic minorities. We propose the following methodology, illustrated through the cultural adaptation of the Addenbrooke’s Cognitive Examination III (ACE-III). We adapted it for British South Asians, the largest ethnic minority group in the UK and translated it into Urdu, a popular South Asian language, 4th most spoken in the UK.
We undertook a multi-method approach. We conducted a systematic review of primary publications of the ACE-III and its predecessors and received feedback through questionnaires from existing adaptors of the ACE-III. We extracted data on cultural adaptation processes and rationale from these sources to develop guidelines on culturally adapting the ACE-III. Potential ACE-III Urdu questions were developed with these guidelines and their cultural appropriateness was assessed through focus groups with 12 British Urdu speaking elderly and an experts’ consensus meeting with two psychiatrists. The ACE-III Urdu was finalised with this feedback and culturally validated by administering it to cognitively healthy lay persons from our target population and then conducting cognitive interviews to assess their understanding and acceptability.
Our systematic review identified 32 publications and we received 7 completed questionnaires. We successfully developed guidelines with this data and utilised them with focus group and consensus meeting feedback to develop the ACE-III Urdu. Through our cognitive interviews we found the overall response to the ACE-III Urdu was positive, with participants finding it straightforward, understandable and culturally acceptable. One question pertaining to memory and one to language were perceived as ambiguous and further adapted according to participant suggestions.
This research resulted in an ACE-III for the British Urdu speaking population that is being psychometrically validated. This can also lead to developing adapted versions of the ACE-III Urdu for other cultures and other language versions with the same culture. The methodology can also be used for developing guidelines for and culturally adapting not just other cognitive tests but health measures in general.