Developing a Global Cancer Stigma Index

Despite increasing recognition about the stigma associated withcancer screening, diagnosis, and treatment-seeking behaviors, there has been relativelylittle attention paid to how to assess and intervene to reduce that stigma. An index tomeasure cancer stigma could empower health program developers and policymakers byidentifying the key areas in which a population could benefit from education to changeperceptions and address misinformation. The index also could be used to rank countriesand communities based on their level of cancer stigma to assess where interventions areneeded. We used structured literature review and expert review to generate a cancerstigma item pool. The item pool was subject to cognitive interviews for culturalappropriateness and comprehension; and data from initial pilot testing were used toreduce the pool of items for translation and field testing. The field test was conductedusing a web-based survey in four samples representing two regions and threelanguages—English and Arabic speakers in Jordan and Egypt, and English and MandarinChinese speakers in China. Factor analyses and item response theory were applied tofinalize the index. The analyses resulted in a 12-item cancer stigma index (CSI) thatwas reliable across all four samples. The CSI scores were highly correlated with ageneral illness stigma scale, and operated as expected noting higher cancer stigma amongmen and those with lower income. The CSI can be used to inform initial cancer educationefforts, identifying overall stigma levels in a country or community and particularissue areas requiring intervention