A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study

Purpose: Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors’ long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship.

Methods: In phase I, a list of 46 outcomes was generated through focus groups (n = 5) with cancer survivors (n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-sample of participants to discuss and finalise the included outcomes. 

Results: Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. 

Conclusions: We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. 

Implications for Cancer Survivors: Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research.