Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

How should we design study invitation materials for cancer survivorship research? Findings from a consumer consultation study (#408)

Xanthia E Bourdaniotis 1 , Susannah K Ayre 1 2 , Elizabeth (Lizzy) A Johnston 1 2 3 , Leah Zajdlewicz 1 , Vanessa L Beesley 4 5 6 , Jason D Pole 7 8 , Aaron Hansen 9 10 , Harry Gasper 10 11 12 , Danica Cossio 13 , Gemma Lock 14 , Belinda C Goodwin 1 15 16
  1. Viertel Cancer Research Centre, Cancer Council Queensland, Brisbane, Queensland, Australia
  2. School of Exercise and Nutrition Sciences, Queensland University of Technology, Brisbane, Queensland, Australia
  3. Population Health Program, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
  4. School of Psychology, The University of Queensland, Brisbane, Queensland, Australia
  5. School of Nursing, Queensland University of Technology, Brisbane, Queensland, Australia
  6. Psychedelic Medicine and Supportive Care Lab, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia
  7. Centre for Health Services Research, The University of Queensland, Brisbane, Queensland, Australia
  8. Dalla Lana School of Public Health, The University of Toronto, Toronto, Ontario, Canada
  9. Princess Alexandra Hospital, Brisbane, Queensland, Australia
  10. School of Medicine, The University of Queensland, Brisbane, Queensland, Australia
  11. Centre of Health, University of Southern Queensland, Springfield, Queensland, Australia
  12. Coastal Cancer Care, Birtinya, Queensland, Australia
  13. Cancer Alliance Queensland, Brisbane, Queensland, Australia
  14. Cancer Council Queensland, Brisbane, Queensland, Australia
  15. Centre for Health Research, University of Southern Queensland, Ipswich, Queensland, Australia
  16. School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia

Aims 

Consumer involvement in the design of study materials can ensure their relevance and sensitivity to the target population, leading to higher enrolment rates. This study aimed to co-design and test study invitation materials that are relevant and acceptable to cancer survivors and their caregivers for a population-based survey aiming to capture their supportive care needs and experiences.    

Methods 

Fifty-two community members, including survivors and caregivers, participated across 15 group workshops and 20 individual interviews. Sample size was determined through concurrent data collection and analysis. During workshops, participants provided feedback regarding the design, wording and layout of a standard invitation letter typically used in registry-based study recruitment. Principles for designing study invitation materials were then identified through content analysis of workshop transcripts. Using these principles, the research team revised the invitation materials. The acceptability of the revised materials was tested through the interviews.    

Results 

Based on consumer feedback, study invitation materials (an invitation letter and a flyer) were created. In the interviews, these invitation materials were found to be acceptable to community members. Eleven principles for designing invitation materials were identified from the consumer consultations: (i) communicate empathy and sensitivity; (ii) consider appropriate timing for participation request; (iii) convey credibility and legitimacy; (iv) facilitate reciprocal benefit; (v) include a ‘human element’; (vi) increase accessibility and ease of participation; (vii) optimise readability; (viii) promote inclusivity; (ix) provide reassurance around privacy; (x) encourage participation through a call to action; and (xi) support informed decisions. 

Conclusions 

Through active and repeated consultation with community members, this study developed study invitation materials that were acceptable and relevant to community members. The principles identified in this study can be used by other researchers to develop invitation materials that are sensitive to the needs and preferences of community members to optimise participation in cancer research.