JMIR Publications

ABSTRACT

Background:

Inconsistency in outcome definition, selection, measurement and reporting is a barrier to high quality research in cancer survivorship. The problems arising from heterogenous outcomes were documented in a systematic review of cancer survivorship monitoring systems (i.e. registries) for the collection of patient-reported outcomes (PRO) from cancer survivors, which reported that outcome inconsistency prevented evidence synthesis and increased the potential for bias in outcome selection and reporting.

Objective:

This study aims to determine which health and quality of life outcomes are the most important to cancer survivors, clinicians and other health professionals in long-term cancer survivorship, and to recommend a standardized core set of PRO for routine population-level assessment.

Methods:

In Phase I, a list of all potentially important outcomes and outcome domains will be generated via focus groups with cancer survivors and a systematic review of patient-reported outcome measures (PROM) for cancer survivorship. The list of outcomes will then be consolidated in a consultation process involving researchers and cancer survivors. In Phase II, three expert panels comprising of cancer survivors, clinicians, and other health and research professionals with cancer survivorship expertise will participate in a consensus process to prioritise the listed outcomes. Over two questionnaire rounds and a consensus meeting with a sub-sample of participants, the list will be refined into a core set of outcome domains amenable to patient report. In Phase III, selection of recommended PROM for assessment of the core outcome set will be undertaken with advice from experts on the design, assessment, analysis and interpretation of PRO.

Results:

Data collection for Phase I is complete and analysis of this data is underway. This data will inform the list of outcomes to be progressed into the consensus process in Phase II.

Conclusions:

Expert consensus-driven recommendations on outcome measurement will facilitate the inclusion of survivorship outcomes considered important by cancer survivors and health professionals in future research. Adoption of the core outcome set will also enable comparison and synthesis of evidence across studies and enhance the quality of PRO data collected in cancer survivorship research, particularly when applied to address macro-level questions.