e-Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Developing a revised Edmonton Symptom Assessment Scale for use with Culturally and Linguistically Diverse and Lower Literacy Patients with Cancer. (#385)

Sharon He 1 , Heather Shepherd 1 , Chloe Lim 1 2 , Joanne Shaw 1 , Haryana Dhillon 1 2 , Phyllis Butow 1 2 , Joanne Corcoran 3 , Lisa Woodland 4
  1. Psycho-oncology Cooperative Research Group, School of Psychology, The University of Sydney, NSW, Australia
  2. Centre for Medical Psychology & Evidence-based Decision-making, School of Psychology, The University of Sydney, NSW, Australia
  3. South Eastern Sydney Local Health District, Multicultural Health Service, NSW, Australia
  4. Priority Populations, NSW Multicultural Health Communication Service, NSW, Australia

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.