An individual’s health literacy and educational levels are vital factors in how they process, understand and respond to Clinical Outcome Assessments (COA). The accuracy of responses can be affected by differences in medical knowledge, reading comprehension and familiarity with health-related terminology. If COAs are not adapted to account for varying health literacy levels, participants may not interpret questions appropriately and this can affect the reliability of the study data.

This article looks at how variations in health literacy and educational levels can have an impact on the translation of COAs. It suggests strategies to improve accessibility and comprehension.

Variability in Health Literacy and Educational Levels

Health literacy refers to a person’s ability to access, process, understand and act upon health information in order to make their own informed decisions. Even within one society, for example Leeds, United Kingdom, there are significant variations in people’s educational backgrounds, exposure to medical concepts and familiarity with formal clinical assessments. Add the dimension of geographical and cultural diversity, these variations become magnified.

People with a higher educational attainment, particularly in developed countries, may be familiar with terms such as ‘neuropathy’ or ‘chronic inflammation’, while people with lower health literacy may have difficulties understanding these terms.

In remote and low-income communities, people may have very limited exposure to formal medical terminology. This can lead to confusion when they are confronted with technical terms, such as in a Patient Information Leaflet, a consent form or a COA.

In addition, in multilingual societies, even mother-tongue speakers of a language, such as Punjabi in the UK, may not be proficient in medical vocabulary and this can lead to misunderstanding and misinterpreting health information.

The content of COAs are presented in a way that may not meet the health literacy levels or information needs of the target populations. The key obstacles are typically to do with:

-             the use of medical jargon, such as using ‘gastrointestinal distress’ instead of ‘stomach pain’

-            complex sentence structures that impose a high cognitive burden on the study participant and to decode them requires an advanced level of reading comprehension

-            Culturally unfamiliar concepts that make responses difficult to interpret accurately. Think skiing terms in a COA localised in Lingala, to be used in Kinshasa…

Variability in levels of educational attainment can exert a significant influence on how individuals engage with written assessments. A person with low literacy may struggle with:

-            Understanding abstract concepts, such as “functional impairment”

-            Interpreting response choices, such as differentiating between “mild”, “moderate” and “severe” in Likert scales

-            Completing self-reported assessments without assistance.

From the development stage, care needs to be devoted to making COA items as simple as possible to understand. This could entail:

-            Using simple medical terminology, such as ‘nerve pain’ instead of ‘neuropathy’

-            Using plain language to improve readability, e.g. “Do you feel short of breath?” instead of “Do you experience respiratory distress?”

-            Use concrete terms where possible in place of abstract medical terminology

-            Items should be simple and clear instead of long and complex, to reduce the cognitive burden on the study participant

-            Conduct readability testing to make sure that questions are well understood across different educational backgrounds. This should be done before phases of validation. It can be done quickly and without great cost

-            Provide clear response options, ideally with descriptive explanations, such as “mild pain – noticeable but does not stop you from doing daily activities”.

The Cultural Dimension

COA development should also think ahead about employing strategies for culturally appropriate communication. The development team could consider the following:

-            Could COA items be supplemented with spoken explanations in cultures where knowledge about health is passed down verbally, rather than through the written medium?

-            Is there a way to blunt the directness of COA items for cultures where indirect communication is preferred, such as in East Asian cultures?

-            How can the wording of COA items fit communication norms specific to a culture while maintaining accuracy and fidelity to the source COA?

-            Could there be spoken versions or interviewer-assisted options for populations less comfortable with written assessments? What affordances could eCOA provide, such as text-to-speech capabilities in whatever target language may be required?

-            How can the development team ensure that target translations do not introduce cultural bias or ‘coating’ that they did not expect, like introducing a taboo topic where there is none intended in the source version?

Conclusion

Variability in health literacy, educational attainment and cultural practices of processing written information can significantly impact how COAs are understood and used in the target translations. If COAs are written clearly and are adapted to communication styles, they can be more inclusive and effective across diverse populations, cultures and geographies.

On the other hand, what is difficult to understand and poorly constructed in the source language is going to be just as poorly understood in the target version, regardless of how well the translations have been done.

Thank you for reading,

Mark Gibson

Leeds, United Kingdom, March 2025