Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Who gets counted? International researchers' perspectives on barriers to engaging adolescent and young adult cancer survivors in psychosocial research (146086)

Fiona E.J. McDonald 1 2 , Monireh Nazari 2 3 4 , Clarissa Schilstra 3 4 , Jordana McLoone 3 4 , Claire E Wakefield 5
  1. Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  2. Canteen Australia, Sydney, NSW, Australia
  3. Behavioural Sciences Unit, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, Discipline of Paediatrics & Child Health, UNSW, Sydney, NSW, Australia
  4. Minderoo Children's Comprehensive Cancer Centre, Sydney Children’s Hospital Randwick, Sydney, NSW, Australia
  5. Division of Quality of Life and Paediatric Palliative Care, Department of Paediatrics,, Stanford University and Stanford Medicine Children’s Health, Palo Alto, California, USA

Background/Aims
High-quality psychosocial research is critical to understanding and addressing the unique needs of adolescent and young adult (AYA) cancer survivors. However, recruitment and retention of AYAs remain persistent challenges, potentially limiting the representativeness and clinical relevance of findings. This study explored international psycho-oncology researchers' perspectives on barriers and facilitators to AYA recruitment and retention, with a focus on implications for evidence generation and equitable participation.

Methods
A mixed-methods survey was completed by 34 international researchers, clinicians, and academics involved in designing, conducting, or overseeing AYA psychosocial cancer research. Survey questions examined recruitment and retention experiences, perceptions of strategy effectiveness, challenges engaging specific population groups, and data quality concerns. Quantitative data were analysed descriptively, while qualitative responses underwent inductive content analysis. Findings were integrated using a convergent mixed-methods approach.

Results
Recruitment difficulties were reported as near-universal across settings and study designs. Participants described institutional prioritisation of clinical trials over psychosocial studies, limiting access to potential participants through established recruitment pathways. Researchers also highlighted a disconnect between institutionally preferred communication methods, particularly email, and AYAs' preference for more personalised and relationship-based engagement. Funding and staffing models were frequently perceived as misaligned with the time-intensive nature of AYA recruitment. Emerging concerns regarding fraudulent and automated online survey responses were identified as threats to data integrity. Notably, 17.7% of respondents reported excluding priority populations from studies due to resource constraints, raising concerns regarding the representativeness of psychosocial evidence and the risk of exacerbating existing inequities.

Conclusions
Systemic barriers to AYA research participation may compromise the evidence base used to inform psychosocial care. Addressing these challenges will require investment in sustainable recruitment infrastructure, flexible engagement approaches, and robust data-quality safeguards. Strengthening participation of underserved populations is particularly important to ensure psychosocial research reflects the diversity of AYA cancer survivors and supports equitable, evidence-informed care.