Background: Finding solutions to Patient Reported Measures (PRMs) completion by patients from culturally and linguistically diverse (CALD) backgrounds or with lower literacy is key to increasing equity in healthcare. The revised Edmonton Symptom Assessment Scale (ESAS-R) is the recommended screening tool for symptom assessment for patients with cancer. We aimed to develop a pictorial version of the ESAS-R to address this equity issue.
Method: Following a literature review on pictographic PRMs, images/pictures were selected to represent the 9 symptoms of the ESAS-R. People from CALD backgrounds were invited to participate in focus groups to explore their views on presenting questions using images, and identification of appropriate images using name/image agreement, and picture/word selection methods. Qualitative data from the focus groups were analysed using content analysis.
Results: Participants (n=20) from 12 different CALD backgrounds took part in three focus groups. Participants were accepting of different image styles to fit with the symptom being represented, e.g. silhouette, cartoon, stick figure, face, emoji. Consensus was provided to depict depression using a silhouette image. Cartoon images were seen to be useful and more expressive compared to stick-figures. However, some preferred stick-figures as they are simpler and gender-neutral. Preference for emoji was age dependent, with majority of participants commenting that older age groups may not understand emojis. Participants recommended a range of modifications to improve the image clarity and cultural acceptability. This included the use of red arrows to depict pain, addition of generic drawings to represent diversity in food choices or using animated pictures to depict shortness of breath.
Conclusion: Use of images to replace words in a PRM is acceptable to CALD groups. Images that reflect symptoms clearly are feasible, if challenging. Amendments to the images were made based on participants’ feedback to further enhance the pictorial ESAS-R for evaluation in future studies.