Large-scale North American cancer survivorship surveys: 2011-2019 update

Abstract

Purpose: There are gaps in our knowledge to provide quality cancer care to the growing numbers of survivors. Leveraging existing data to answer survivorship research questions is one approach to address these gaps. Therefore, the purpose of this paper is to replicate and expand a previous report of existing cancer survivorship survey data.

Methods: We conducted a trifold search strategy for relevant surveys and data sets to (1) determine the extent to which cancer survivors are being surveyed, (2) determine the topics being covered in these surveys, and (3) create a compendium of information about these surveys and data sets, so researchers can conduct additional analyses.

Results: Thirty-five surveys were identified and included in this report; most were longitudinal studies (71%) in adult cancer survivors (91%). The domains addressed in these surveys were general medical characteristics, medical conditions, costs, employment, symptoms and/or side effects, psychosocial factors and coping, perceived quality of care, and health behaviors.

Conclusions: Existing data are available for researchers to explore new knowledge to enhance cancer survivorship quality care. This is an opportunity to fully utilize existing data to answer survivorship questions in a cost effective manner.

Implications for cancer survivors: Survivors should be encouraged to participate in research studies as these data can close the gap in our knowledge and care of this growing population.

Keywords: Cancer; North America; Surveys; Survivors; Systematic review.