A Landscape Analysis of U.S. National Cancer Institute's Cancer Stigma Research Portfolio

Abstract

Background: Successful characterization of cancer stigma among various populations has the potential to inform effective interventions targeted at combatting the social ignominy. Instances of social discrediting range from misconceptions about cancer treatment that prevent early detection to biases due to physical changes of cancer survivors, such as alopecia, mastectomy or colostomy. Cancer stigmas not only pose substantial challenges to disease control, they also exacerbate global disparities in health outcomes. To understand the current landscape of domestic and global cancer stigma research funded by the National Cancer Institute (NCI), a portfolio analysis of active awards between FY10-FY17 was conducted. Aim: This portfolio analysis aims to define the scope of NCI-funded research related to cancer stigma. Methods: The National Institutes of Health IMPAC II database was queried to retrieve NCI-funded grants related to cancer stigma using iterations of the term 'stigma', as well as other key words such as 'social isolation', 'shame' and 'disgrace', between FY10-FY17. After removing grant supplements and competitive renewals, grant abstracts and specific aims were reviewed to confirm projects fell within the parameters of cancer stigma research. Grants were then stratified by Common Scientific Outline (CSO) code; cancer site; and international components. Results: Forty-eight distinct NCI-funded projects that addressed cancer stigma were identified. Of those, 90% (n = 43) were coded to CSO code 'Cancer Control, Survivorship and Outcomes.' Additionally, over half (54%) of the projects focused on breast (13) or lung (13) cancer. All grants were awarded to US institutions, 6 of which included foreign collaborators. Four (8%) NCI-funded grants focus on the development of measures or instruments to uniformly quantify experiences of cancer stigma. Extramural grants with a cancer stigma component represented 0.1% of NCI's total FY 2008-2017 investment of over $25 billion USD. Conclusion: Building a knowledge base of the major contributors to cancer stigma and its impact on the illness experience is critical to improved treatment outcomes. A substantial proportion of NCI-supported stigma grants have been funded as smaller, exploratory projects. This may suggest that larger investments in time and resources are needed to fully comprehend the impact of stigma along the cancer continuum. A lack of NCI-funded tools to measure stigma across contexts and cultures is representative of the broader scientific literature, and poses challenges to the production of standardized data which could highlight global disparities. A comprehensive cancer stigma literature review and NCI portfolio analysis will illuminate research gaps and provide an avenue for recommendations of culturally tailored, evidence-based measurement tools, studies, or interventions.