e-Delphi study on European expert views about "cancer survivor" and related terminologies

Definitions of "cancer survivors" vary from individuals from diagnosis throughout their life, to individuals post-curative intent treatment. Attempts to categorise groups of people who have or had cancer also differ. This study aims to generate European expert consensus opinion about cancer survivor terminology and categorisation relevant to developing a model of care.

This was an electronic Delphi study where specialist palliative care (SPC) and oncology (ONC) European experts, including patient advocates, were purposively sampled to form two separate groups. Participants selected agreement with 105 questions/statements developed from literature reviews in round 1, and in subsequent rounds statements were modified/added according to feedback. The study was terminated when consensus (pre-defined as ≥ 75% within each group) and stability (determined by Spearman's Rank Order Correlation) were reached for most statements. The Chi square test for goodness of fit compared agreement between groups.

Eighty-six SPC experts from 19 countries/regions, and 54 ONC experts from 17 countries/regions began the process, with three rounds completed by 80 and 49 respectively. Eight statements about "cancer survivor" application reached consensus in both groups, demonstrating agreement that "cancer survivor" should be applied to people post-treatment with no evidence of disease. Two other statements reached consensus in only one group (with a significant difference). Two categorisations reached consensus in both groups.

These experts suggest that application of "cancer survivor" to people with active cancer should be reconsidered.

Pragmatic categorisation of people who have/had cancer could help provide tailored care for different groups.