Longitudinal research is needed to understand the ongoing impacts of cancer on adolescent and young adult (AYA) survivors. A multidisciplinary group of stakeholders was consulted to obtain: i) multiple perspectives on research priorities for AYA survivorship care; and ii) advice on designing a longitudinal study.
We used a mixed methods approach comprising: a) a systematic literature review; b) a “value-weighting” survey to identify research priorities; and c) workshops to discuss the survey findings and seek advice on study design. This abstract focusses on the survey component. 82 stakeholders were asked to allocate 100 units of funding between sub-categories of 8 broad research areas. They were also asked to allocate 100 units between the broad research areas. Results were compared between ‘consumers’ and ‘professionals’.
Stakeholders allocated the most funding units to the following sub-categories within the broad research areas; i psychological adjustment within “psychological issues”, ii ongoing physical symptoms, within “physical functioning, iii childbearing/ plans for having children within "intimate relationships”, iv change of career plans due to cancer within “education, work and leisure”, v feeling of loneliness and isolation within “social issues”, vi financial stress and financial insecurity within “practical issues”, vii family communication within "family issues” and finally viii impact on identity/self-concept due to cancer within “identity and spirituality”.
‘Psychological issues’ was ranked first among the broad research topics as most likely to benefit to young cancer survivors and their families. ‘Physical functioning and health’ was ranked second for both groups, while ‘education, work and leisure” was scored third highest by the consumers and “intimate relationships” third highest by professionals.
Findings from this survey have highlighted the research priorities needed to advance the field of AYA cancer survivorship. They will be used to design a longitudinal study that can positively impact care and outcomes for AYA survivors.