Poster Presentation Cancer Survivorship Conference 2023

Longitudinal studies with AYA cancer survivors: How to improve recruitment and retention (#155)

Fiona EJ McDonald 1 , Tayhla Ryder 1 , Cindy Kok 1 , Kit Bibby 1 , Pandora Patterson 1
  1. Canteen Australia, Newtown, NSW, Australia

Background/introduction 

Information is lacking about the long-term psychosocial outcomes of survivors who developed cancer as an adolescent or young adult (AYA) and the predictors of these outcomes. Canteen is proposing a longitudinal cancer survivorship study following AYA participants over a 5-year period. The difficulties of recruiting and retaining participants in longitudinal studies are well known, and are not exclusive to cancer survivors or AYA populations although these entail their own specific and intersecting challenges.  

Methods 

To guide the development of the proposed longitudinal study, we consulted stakeholders using a multiple-phase mixed-methods design. Here we present findings from 5 workshops held with 25 stakeholders including 6 AYAs with a personal cancer experience, 7 academics and 7 healthcare professionals. The stakeholders were consulted on the methodology of the proposed longitudinal study, and on strategies for promoting participant recruitment and retention. 

Results  

Recommendations from the workshops included: 

  • Utilising multiple recruitment pathways, including via organisational partnerships, public advertising and pre-existing relationships;  
  • Developing age-appropriate recruitment messages about the study’s purpose in collaboration with consumers; 
  • Maintaining regular, two-way communication with participants to support retention;  
  • Offering multiple formats for study information (e.g., written and audio-visual participant information and consent forms) and data collection to accommodate different preferences and accessibility needs; 
    Being mindful of the timing of study requests with regards to scanxiety and significant anniversaries. 

Stakeholders also indicated that the acceptable frequency of data collection has an inverse relationship with the time taken to complete the survey or interview. 

Conclusions 

At their core, these recommendations are about making study participation worthwhile and accessible to AYA survivors, as it is only through contributions of their time and stories over several years that we can understand what influences outcomes and use this to inform interventions and advocacy.