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 TutelmanChantale ThurstonTamara RaderBrianna HenryTristyn RangerMohamed AbdelaalMichelle BlueTimothy W BucklandStefanie Del GobboLexy DobsonEmily GallantCheryl HeykoopMackenzie JansenLorna LarsenNicole MasejaSara J IsraelsVinesha RamasamyMarlie SmithEvan TaylorNadia WendowskySara BeattieJacqueline Lorene BenderKathryn A BirnieSheila N GarlandLindsay A JibbMelanie NoelFiona S M SchultePublished in: Current oncology (Toronto, Ont.) (2024)
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.
Keyphrases
- papillary thyroid
- squamous cell
- young adults
- end stage renal disease
- palliative care
- randomized controlled trial
- mental health
- healthcare
- quality improvement
- ejection fraction
- newly diagnosed
- systematic review
- metabolic syndrome
- peritoneal dialysis
- public health
- case report
- prognostic factors
- adipose tissue
- deep learning
- artificial intelligence