Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Psychosocial Barriers to Research Participation: Mental Health at diagnosis in Adolescents and Young Adults (AYA) with Cancer   (126482)

Lorna A Fern 1 , Tara Searle 1 , Amparo Domingo-Lacasa 1 , Rachel M Taylor 1 2 , CCTYA TYA Trial Access Group 1
  1. Cancer Clinical Trials Unit, University College London Hospitals, London, Greater London, United Kingdom
  2. Department of Targeted Intervention, University College London, London, Greater London, UK

Background
Internationally, AYA are under-represented in trials negatively impacting outcomes. Despite national ambitions in England to recruit 50% of adolescents and young adults (AYA) with cancer into clinical trials by 2025. Recruitment remains below target.

We set out to design a series of ‘safe-to-fail’ experiments — low-risk, exploratory interventions — to understand and improve how AYAs are approached for research, and how healthcare professionals (HCPs) experience that process within a large AYA specialist cancer centre.

Methods
We worked with Cynefin, adopting novel SenseMaker® technology combining quantitative and qualitative data with personal experiences and stories. A multidisciplinary professional group and patient group co-created a bespoke interactive survey capturing data utilising open ended, triad and dyad questions. Both groups were involved in analysis, interpretation and constraint mapping to inform the safe-to-fail experiments.

Outcomes
Multiple datasets were analysed, including SenseMaker® Surveys and workshop transcripts and outputs. Sixteen AYA, diagnosed with cancer aged 16-26 and 16 healthcare professionals (HCP) completed the SenseMaker® survey. Four themes emerged:

Impact on practice

Four key themes emerged:

  1. Mental health at diagnosis, affects how AYA understand information, make decisions, and engage with research opportunities.
  2. Shared decision making in the clinical space, notably discrepancies between perceptions of decision-making influence, AYA versus professionals.
  3. Wider support networks including the wider multidisciplinary team and peer support.
  4. Systemic pressures on HCP working with AYA, particularly the current working environment (time, pressure and post pandemic waitlists).

Constraint mapping identified three safe-to-fail experiments around communication, education and embedding research within the wider hospital environment.

Discussion
Psychosocial interventions may improve recruitment of AYA to cancer trials. In our centre, uptake of the survey was low for both AYA and professionals, therefore utilisation of the full SenseMaker® methodology was not possible and highlights the need to improve recruitment strategies for AYA.