Cultural and contextual adaptation is a vital component of the localisation process of Clinical Outcomes Assessments (COA). Even when items and concepts are translated faithfully, failure to consider the cultural dimension can lead to misinterpretations, disengagement or invalid responses.

This article takes another look at the localisation process in terms of cultural relevance, behavioural expectations and worldview differences across cultures and how this affects how people answer items in COAs.

Cultural Coating

In other articles, we have introduced the concept of ‘cultural coating’, the additional shades of meaning that a word acquires when being translated from one language to another. This coating, or shades of additional connotation, can affect how individuals interpret health-related information. For example, a term that seems innocent enough in the source language, such as ‘cancer’, may take on additional connotations of shame and taboo in another language.

Cultural coating of a word might influence behavioural expectations. For instance, when confronted with the word ‘cancer’ in a culture where the concept is associated with shame and taboo, how do you react? Recoil and take evasive action? This could be physical, such as physically avoiding the person and their friends and family in some cases, or it could be metaphorical, such as circumlocution, euphemism, avoiding saying the word altogether. It can affect a person’s worldview, which may be something that the developer in the source language may never have expected. For instance, the word ‘cancer’ may be so full of connotation that it affects how healthcare professionals deal with cancer diagnoses, like not disclosing the diagnosis or prognosis to the patient, denying them the right to make decisions about their own lives.

Cultural coating can bestow a word with symbolic meanings, such as stigma, and even legal and ethical considerations. For instance, in that culture, what are the ethical and legal repercussions of not disclosing a diagnosis to a patient with cancer? Where there is a shared understanding of the weight of the cultural coating, this may be aligned with existing legal and ethical frameworks. A topic for another article: what happens when migrants from such a culture, let us say for argument’s sake, Iraq or Syria, are receiving a bad-news diagnosis in a Western clinical setting where there may not be any cultural baggage attached to ‘cancer’, as a concept? What are the ethical issues at stake? This must be a dilemma in clinics and hospitals all over Western societies.

Cultural Norms and Behavioural Expectations

Cultural expectations to do with independence, disability, tolerance of pain and mental health can vary across regions. Quality of Life questions about independent caring and living, coping on one’s own with the real-life impacts of, for example, an illness that restricts mobility, have assumptions embedded within them at source. They do not consider the fact that there are cultures where family caregiving is the norm. Decision-making about an individual’s health is frequently a collective endeavour. This makes assumptions about personal empowerment and informed decision-making redundant and irrelevant, at least as far as the Western perceptions of these concepts take shape. Empowerment and decision-making are more of a collective move, rather than it being down to individual choice.

Similarly, perceptions around pain and suffering differ across cultures. Some cultures are more expressive about discomfort, while others internalise it and do not express it – outwardly at least – due to societal norms and expectations.  This variation can skew self-reported data if the COA does not account for these differences – and very few do.

The same applies to acknowledgement of mental health. In some East Asian cultures, openly sharing personal mental distress is discouraged, whereas in many European and Anglosphere cultures, the stigma around mental health struggles is falling away. In cultures where mental health status is not easily disclosed, there could be an underreporting of symptoms in clinical assessments where this is not considered. For new COAs, a solution could be to align items with cultural expectations while being faithful to assessment integrity. This would require real-world research at the beginning of the process.

Collectivist and Individualist Worldviews

COAs that have been developed in Western societies, that is, most of them, focus on personal experiences. These assume that participants will respond according to their own individual perceptions, feelings and opinions. However, in collectivist cultures, the individual and the group perception (family, community) of well-being are closely intertwined. This can lead to variations in responses. For instance, in pain reporting, family impact might be prioritised over personal discomfort. Neglect of the collective in COA question design is evident in commonly worded items such as: ‘How has your illness affected your daily activities?’ – the assumption being one’s personal activities.

To be relevant for cultures where social roles are central, this might be better modified to:  ‘How has your condition affected your ability to fulfil family or social responsibilities?’. Therefore, the phrasing of COA items and their response choices need to allow for both individual and community-based perspectives.

What does this mean for COA development?

Cultural and contextual adaptation in the localisation of COAs is vital for making sure that study participants give accurate and meaningful responses. Beyond translation, cultural nuances such as connotations, symbolic meanings and behavioural norms need to be baked into the development of COAs to prevent misinterpretations and disengagement.

The concept of ‘cultural coating’ highlights how words carry additional layers of meaning that can shape people’s perceptions, decision-making and norms relating to individual quality of life and wellbeing. Differences in cultural norms regarding independence, pain expression, mental health and divergent worldviews can affect how individuals respond to COA items. By integrating cultural perspectives during the development stages, COAs can become more inclusive. This could mean that responses provided by study participants accurately reflect the lived experiences of diverse populations whilst maintaining scientific validity.

Thank you for reading,

Mark Gibson

Leeds, United Kingdom, March 2025