Current Oncology (May 2024)

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership

  • Perri R. Tutelman,
  • Chantale Thurston,
  • Tamara Rader,
  • Brianna Henry,
  • Tristyn Ranger,
  • Mohamed Abdelaal,
  • Michelle Blue,
  • Timothy W. Buckland,
  • Stefanie Del Gobbo,
  • Lexy Dobson,
  • Emily Gallant,
  • Cheryl Heykoop,
  • Mackenzie Jansen,
  • Lorna Larsen,
  • Nicole Maseja,
  • Sapna Oberoi,
  • Vinesha Ramasamy,
  • Marlie Smith,
  • Evan Taylor,
  • Nadia Wendowsky,
  • Sara Beattie,
  • Jacqueline Bender,
  • Kathryn A. Birnie,
  • Sheila N. Garland,
  • Lindsay Jibb,
  • Melanie Noel,
  • Fiona S. M. Schulte

DOI
https://doi.org/10.3390/curroncol31050219
Journal volume & issue
Vol. 31, no. 5
pp. 2874 – 2880

Abstract

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Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

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