Cancer stigma and cancer screening attendance: a population-based survey in England

Abstract

BackgroundIllness-related stigma attracts considerable research interest, but few studies have examined stigmatisation of cancer in the healthy population. Exploratory work suggests that stigma might discourage people from engaging in cancer prevention or early detection. We aimed to assess the prevalence and population distribution of cancer stigma, and its association with attendance for cancer screening. MethodsWe surveyed 2048 adults aged 18–70 years in England in April, 2016. Cancer stigma was measured with the Cancer Stigma Scale (CASS), a validated scale with six subdomains representing severity, personal responsibility, awkwardness, avoidance, policy opposition, and financial discrimination. Using a total stigma score, we assessed the association between stigma and screening uptake among participants eligible for cervical (n=786), breast (386), and bowel cancer (458) screening. Ethics approval was obtained from the UCL Research Ethics Committee (5771/002, March 2016). All participants gave verbal informed consent. FindingsLevels of cancer stigma were low but varied across the six subdomains. Whereas only 4–5% of adults (n=76–89 across items) anticipated avoiding someone with cancer, 10–17% (176–305) would feel awkward around them. A similar proportion (8–11%, 139–194) agreed with personal responsibility statements (eg, “a person with cancer is to blame for their condition”). Policy opposition statements (eg, “we do not have a responsibility to provide the best possible care for cancer patients”) were endorsed by 11–17% (202–308), and even more (16–31%, 297–563) agreed that it was acceptable to make financial decisions on the basis of a person's cancer diagnosis—eg, allowing banks to refuse mortgages. CASS items associated with the severity of consequences after a cancer diagnosis (eg, “cancer ruins close personal relationships”) attracted the most agreement (31–51%, 563–939). Higher stigma scores were associated with lower socioeconomic status (p=0·029), being male (p=0·00079), and being from an ethnic minority background (p<0·0001), but not with age. Higher cancer stigma was associated with irregular or non-participation in all three screening programmes (odds ratio for cervical cancer 1·68, 95% CI 1·23–2·31 [p=0·0013]; breast 2·12, 1·27–3·53 [p=0·0038]; bowel 1·69, 1·14–2·51 [p=0·0092]). InterpretationCancer stigma still exists in the UK, with some aspects more prevalent than others. Stigma is greatest among particular subpopulations, such as those from ethnic minority backgrounds, and is negatively associated with cancer screening behaviours. FundingThis study was supported by a programme grant from Cancer Research UK awarded to Prof Jane Wardle (C1418/A14134). All authors are funded by Cancer Research UK. Cancer Research UK was not involved in the design of this study, collection, analysis, or interpretation of the results; in the writing of the abstract; or in the decision to submit for publication.