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.

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.

Symptom severity and trajectories among adolescent and young adult patients with cancer.

BACKGROUND: Patients with cancer experience significant symptom burden. We investigated symptom severity in adolescents and young adults (18- to 39-year-olds) during the year following a cancer diagnosis and made comparisons with older adult (those older than 40 years of age) patients with cancer. METHODS: All Albertan residents diagnosed with a first primary neoplasm at 18 years of age or older between April 1, 2018, and December 31, 2019, and who completed at least 1 electronic patient-reported outcome questionnaire were included. Symptom severity was assessed using the Edmonton Symptom Assessment System-revised. Descriptive statistics, multivariable logistic modeling, and mixed logistic regression modeling were used to describe symptom severity, identify risk factors, and assess symptom trajectories, respectively. RESULTS: In total, 473 and 322 adolescents and young adults completed a patient-reported outcomes questionnaire at diagnosis and 1 year after diagnosis, respectively. Adolescent and young adult patients with cancer reported high levels of tiredness, poor well-being, and anxiety. Important risk factors included metastatic disease, female sex, treatment types received, and age at diagnosis. Symptom severity varied by clinical tumor group, with those diagnosed with sarcoma having the worst scores for all symptoms at diagnosis and patients with intrathoracic or endocrine tumors having the worst scores for all symptoms at 1 year after diagnosis. Statistically significant differences in symptom severity over the 1-year period were observed between adolescents and young adults and older adults-specifically, the odds of having moderate to severe symptoms were statistically significantly greater among adolescents and young adults with respect to pain, tiredness, nausea, depression, anxiety, and poor well-being (all P < .01). CONCLUSIONS: A substantial proportion of adolescents and young adults experience moderate to severe symptoms during the year following diagnosis. Modifying existing supportive services and developing interventions based on the needs of adolescent and young adult patients with cancer could aid symptom control.