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

Charlotte Vrinten, Ailish Gallagher, Jo Waller, Laura A V Marlow, Charlotte Vrinten, Ailish Gallagher, Jo Waller, Laura A V Marlow

Abstract

Background: Cancer-related stigma attracts considerable research interest, but few studies have examined stigmatisation in the healthy population. Qualitative studies suggest that stigma can discourage people from attending cancer screening. We aimed to quantify the prevalence and socio-demographic patterning of cancer stigma in the general population and to explore its association with cancer screening attendance.

Methods: In 2016, 1916 adults aged 18-70 years took part in home-based interviews in England. Measures assessed demographic characteristics, self-reported screening uptake for cervical (n = 681), breast (n = 326) and colorectal cancer (n = 371), and cancer stigma. Cancer stigma was measured with the validated Cancer Stigma Scale which assesses six subdomains (Severity, Personal Responsibility, Awkwardness, Avoidance, Policy Opposition, and Financial Discrimination), from which a mean score was calculated. Logistic regression analyses examined the association between cancer stigma and having been screened as recommended versus not.

Results: Levels of cancer stigma were low, but varied across the six subdomains. Items regarding the severity of a cancer diagnosis attracted the highest levels of agreement (30-51%), followed by statements about the acceptability of making financial decisions on the basis of a cancer diagnosis such as allowing banks to refuse a mortgage (16-31%) and policy opposition statements such as not having a responsibility to provide the best possible care for cancer patients (10-17%). A similar proportion anticipated feeling awkward around someone with cancer (10-17%). Only 8-11% agreed with personal responsibility statements, such as that a person with cancer is to blame for their condition, while 4-5% of adults anticipated avoiding someone with cancer. Stigma was significantly higher in men (p < .05) and in those from ethnic minority backgrounds (p < .001). Higher cancer stigma was associated with not being screened as recommended for all three screening programmes (cervical: adjusted OR 1.59, 95% CI 1.15-2.20; breast: adjusted OR = 1.97, 95% CI 1.17-3.32; colorectal: adjusted OR = 1.59, 95% CI 1.06-2.38).

Conclusions: Cancer stigma is generally low, but some aspects of stigma are more prevalent than others. Stigma is more prevalent in certain population subgroups and is negatively associated with cancer screening uptake. These benchmark findings may help track and reduce cancer stigma over time.

Keywords: Bowel; Breast; Cancer; Cervical; Early detection; Prevention; Screening; Stigma.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Flow chart of participant inclusion and exclusion
Fig. 2
Fig. 2
Unadjusted (left) and adjusted (right) odds ratios and 95% confidence intervals for not being screened as recommended (versus being screened as recommended) by total CASS score (continuous)

References

    1. Else-Quest N, Jackson T. Chapter 8: Cancer stigma. In: Corrigan PW, editor. The stigma of disease and disability: understanding causes and overcoming injustices. Washington DC: American Psychological Association; 2014. pp. 165–181.
    1. Agustina E, Dodd RH, Waller J, Vrinten C. Understanding middle-aged and older adults' first associations with the word "cancer": a mixed methods study in England. Psychooncology. 2018;27:309–315. doi: 10.1002/pon.4569.
    1. Quaife SL, Winstanley K, Robb KA, Simon AE, Ramirez AJ, Forbes LJ, et al. Socioeconomic inequalities in attitudes towards cancer: an international cancer benchmarking partnership study. Eur J Cancer Prev. 2015;24:253–260. doi: 10.1097/CEJ.0000000000000140.
    1. Weiss MG, Ramakrishna J. Stigma interventions and research for international health. Lancet. 2006;367:536–538. doi: 10.1016/S0140-6736(06)68189-0.
    1. Jones N, Corrigan PW. Chapter 1: Understanding stigma. In: Corrigan PW, editor. The stigma of disease and disability: understanding causes and overcoming injustices. Washington DC: American Psychological Association; 2014. pp. 9–34.
    1. Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall; 1963.
    1. Knapp Sarah, Marziliano Allison, Moyer Anne. Identity threat and stigma in cancer patients. Health Psychology Open. 2014;1(1):205510291455228. doi: 10.1177/2055102914552281.
    1. Lebel S, Devins GM. Stigma in cancer patients whose behavior may have contributed to their disease. Future Oncol. 2008;4:717–733. doi: 10.2217/14796694.4.5.717.
    1. Marlow LA, Waller J, Wardle J. Variation in blame attributions across different cancer types. Cancer Epidemiol Biomark Prev. 2010;19:1799–1805. doi: 10.1158/1055-9965.EPI-09-1298.
    1. Else-Quest NM, LoConte NK, Schiller JH, Hyde JS. Perceived stigma, self-blame, and adjustment among lung, breast and prostate cancer patients. Psychol Health. 2009;24:949–964. doi: 10.1080/08870440802074664.
    1. Chambers SK, Dunn J, Occhipinti S, Hughes S, Baade P, Sinclair S, et al. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer. 2012;12:184. doi: 10.1186/1471-2407-12-184.
    1. Ahmad AS, Ormiston-Smith N, Sasieni PD. Trends in the lifetime risk of developing cancer in Great Britain: comparison of risk for those born from 1930 to 1960. Br J Cancer. 2015;112:943–947. doi: 10.1038/bjc.2014.606.
    1. Carter-Harris L, Hermann CP, Schreiber J, Weaver MT, Rawl SM. Lung cancer stigma predicts timing of medical help-seeking behavior. Oncol Nurs Forum. 2014;41:E203–E210. doi: 10.1188/14.ONF.E203-E210.
    1. Miles A, Rainbow S, von Wagner C. Cancer fatalism and poor self-rated health mediate the association between socioeconomic status and uptake of colorectal cancer screening in England. Cancer Epidemiol Biomark Prev. 2011;20:2132–2140. doi: 10.1158/1055-9965.EPI-11-0453.
    1. Ndukwe EG, Williams KP, Sheppard V. Knowledge and perspectives of breast and cervical cancer screening among female African immigrants in the Washington D.C. metropolitan area. J Cancer Educ. 2013;28:748–754. doi: 10.1007/s13187-013-0521-x.
    1. Michielutte R, Dignan MB, Sharp PC, Boxley J, Wells HB. Skin cancer prevention and early detection practices in a sample of rural women. Prev Med. 1996;25:673–683. doi: 10.1006/pmed.1996.0106.
    1. Moser RP, Arndt J, Han PK, Waters EA, Amsellem M, Hesse BW. Perceptions of cancer as a death sentence: prevalence and consequences. J Health Psychol. 2014;19:1518–1524. doi: 10.1177/1359105313494924.
    1. Corrigan P. How stigma interferes with mental health care. Am Psychol. 2004;59:614–625. doi: 10.1037/0003-066X.59.7.614.
    1. Villatoro AP, DuPont-Reyes MJ, Phelan JC, Painter K, Link BG. Parental recognition of preadolescent mental health problems: does stigma matter? Soc Sci Med. 2018;216:88–96. doi: 10.1016/j.socscimed.2018.09.040.
    1. Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, et al. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45:11–27. doi: 10.1017/S0033291714000129.
    1. Gary FA. Stigma: barrier to mental health care among ethnic minorities. Issues Ment Health Nurs. 2005;26:979–999. doi: 10.1080/01612840500280638.
    1. Marcell AV, Morgan AR, Sanders R, Lunardi N, Pilgrim NA, Jennings JM, et al. The socioecology of sexual and reproductive health care use among young urban minority males. J Adolesc Health. 2017;60:402–410. doi: 10.1016/j.jadohealth.2016.11.014.
    1. Rade DA, Crawford G, Lobo R, Gray C, Brown G. Sexual health help-seeking behavior among migrants from sub-Saharan Africa and South East Asia living in high income countries: a systematic review. Int J Environ Res Public Health. 2018;15:E1311. doi: 10.3390/ijerph15071311.
    1. Vaughn-Sandler V, Sherman C, Aronsohn A, Volk ML. Consequences of perceived stigma among patients with cirrhosis. Dig Dis Sci. 2014;59:681–686. doi: 10.1007/s10620-013-2942-0.
    1. Herrmann LK, Welter E, Leverenz J, Lerner AJ, Udelson N, Kanetsky C, et al. A systematic review of dementia-related stigma research: can we move the stigma dial? Am J Geriatr Psychiatry. 2018;26:316–331. doi: 10.1016/j.jagp.2017.09.006.
    1. O'Connor M, O'Leary E, Waller J, Gallagher P, Martin CM, O’Leary JJ, et al. Socio-economic variations in anticipated adverse reactions to testing HPV positive: implications for the introduction of primary HPV-based cervical screening. Prev Med. 2018;115:90–96. doi: 10.1016/j.ypmed.2018.08.017.
    1. Myrick JG. Public perceptions of celebrity cancer deaths: how identification and emotions shape cancer stigma and behavioral intentions. Health Commun. 2017;32:1385–1395. doi: 10.1080/10410236.2016.1224450.
    1. United States Census Bureau. Quick Facts. Available from: . Accessed 6 June 2019.
    1. Marlow LA, Wardle J. Development of a scale to assess cancer stigma in the non-patient population. BMC Cancer. 2014;14:285. doi: 10.1186/1471-2407-14-285.
    1. Marlow LA, Waller J, Wardle J. Does lung cancer attract greater stigma than other cancer types? Lung Cancer. 2015;88:104–107. doi: 10.1016/j.lungcan.2015.01.024.
    1. Murphy PJ, Marlow LAV, Waller J, Vrinten C. What is it about a cancer diagnosis that would worry people? A population-based survey of adults in England. BMC Cancer. 2018;18:86–95. doi: 10.1186/s12885-017-3963-4.
    1. Office for National Statistics. 2011 Census questionnaire for England. Available from: . Accessed 6 June 2019.
    1. National Readership Survey. Social Grade. Available from . Accessed 6 June 2019.
    1. Korn EL, Graubard BI. Epidemiologic studies utilizing surveys: accounting for the sampling design. Am J Public Health. 1991;81:1166–1173. doi: 10.2105/AJPH.81.9.1166.
    1. Schulte A. Consensus versus disagreement in disease-related stigma: a comparison of reactions to AIDS and cancer patients. Sociol Perspect. 2002;45:81–104. doi: 10.1525/sop.2002.45.1.81.
    1. Mosher CE, Danoff-Burg S. Death anxiety and cancer-related stigma: a terror management analysis. Death Studies. 2007;31:885–907. doi: 10.1080/07481180701603360.
    1. Purtle J, Le-Scherban F, Wang X, Shattuck PT, Proctor EK, Brownson RC. Audience segmentation to disseminate behavioral health evidence to legislators: an empirical clustering analysis. Implement Sci. 2018;13:121. doi: 10.1186/s13012-018-0816-8.
    1. Randhawa G, Owens A. The meanings of cancer and perceptions of cancer services among south Asians in Luton, UK. Br J Cancer. 2004;91:62–68. doi: 10.1038/sj.bjc.6601892.
    1. Thomas VN, Saleem T, Abraham R. Barriers to effective uptake of cancer screening among black and minority ethnic groups. Int J Palliat Nurs. 2005;11:562–571. doi: 10.12968/ijpn.2005.11.11.20096.
    1. Bedi M, Devins GM. Cultural considerations for south Asian women with breast cancer. J Cancer Surviv. 2016;10:31–50. doi: 10.1007/s11764-015-0449-8.
    1. Jones CE, Maben J, Lucas G, Davies EA, Jack RH, Ream E. Barriers to early diagnosis of symptomatic breast cancer: a qualitative study of black African, black Caribbean and white British women living in the UK. BMJ Open. 2015;5:e006944. doi: 10.1136/bmjopen-2014-006944.
    1. Allford A, Qureshi N, Barwell J, Lewis C, Kai J. What hinders minority ethnic access to cancer genetics services and what may help? Eur J Human Genet. 2014;22:866–874. doi: 10.1038/ejhg.2013.257.
    1. Hann KEJ, Freeman M, Fraser L, Waller J, Sanderson SC, Rahman B, et al. Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review. BMC Public Health. 2017;17:503. doi: 10.1186/s12889-017-4375-8.
    1. Asare M, Peppone LJ, Roscoe JA, Kleckner IR, Mustian KM, Heckler CE, et al. Racial differences in information needs during and after cancer treatment: a nationwide, longitudinal survey by the University of Rochester cancer center national cancer institute community oncology research program. J Cancer Educ. 2018;33:95–101. doi: 10.1007/s13187-016-1038-x.
    1. Lian M, Schootman M, Doubeni CA, Park Y, Major JM, Stone RA, et al. Geographic variation in colorectal cancer survival and the role of small-area socioeconomic deprivation: a multilevel survival analysis of the NIH-AARP diet and health study cohort. Am J Epidemiol. 2011;174:828–838. doi: 10.1093/aje/kwr162.
    1. Sauer AG, Siegel RL, Jemal A, Fedewa SA. Updated review of prevalence of major risk factors and use of screening tests for cancer in the United States. Cancer Epidemiol Biomark Prev. 2017;26:1192–1208. doi: 10.1158/1055-9965.EPI-17-0219.
    1. Carter-Harris L, Ceppa DP, Hanna N, Rawl SM. Lung cancer screening: what do long-term smokers know and believe? Health Expect. 2017;20:59–68. doi: 10.1111/hex.12433.
    1. Crane M, Scott N, O'Hara BJ, Aranda S, Lafontaine M, Stacey I, et al. Knowledge of the signs and symptoms and risk factors of lung cancer in Australia: mixed methods study. BMC Public Health. 2016;16:508. doi: 10.1186/s12889-016-3051-8.
    1. Parkin DM, Boyd L, Walker LC. 16. The fraction of cancer attributable to lifestyle and environmental factors in the UK in 2010. Br J Cancer. 2011;105(Suppl 2):S77–S81. doi: 10.1038/bjc.2011.489.
    1. Riley KE, Ulrich MR, Hamann HA, Ostroff JS. Decreasing smoking but increasing stigma? Anti-tobacco campaigns, public health, and cancer care. AMA J Ethics. 2017;19:475–485. doi: 10.1001/journalofethics.2017.19.5.msoc1-1705.

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