Evidence from the emergence of COVID-19, that the British Black and Asian groups have worse outcomes than White groups, has brought renewed attention to the need for more effective solutions to address ethnic inequalities in health. What we saw in COVID-19 resonates with contemporary evidence of inequalities in several chronic diseases, including cancer, which accounts for over 160,000 deaths annually in the UK.1 Primarily, we know that when compared with White groups, British Asian and Black groups, in particular, have poorer outcomes of some cancers and are more likely to report suboptimal care experiences. 2-5 What is less clear - in the context of our free-at-the-point of access health care - is why such inequalities persist. Research on the subject of ethnic inequalities is sparse due to limitations of ethnicity data within the NHS, and the lack of diversity in primary research.
What evidence there is points to patient factors such as symptom awareness and uptake of cancer screening, which are generally poorer among ethnic minorities than the British White group. 6-9 In addition, a recent systematic review showed that, when symptomatic, the Asian and Black groups may delay presenting to their general practitioners (GP) or under-report symptoms during initial consultations. 13 These factors may influence the route to diagnosis (RTD), which describes patient journeys to secondary care where definitive diagnosis occurs (Box 1).10-12 It includes cancers detected via a screening programme, those reflecting the urgency of referral (Emergency presentation, Two-Week Wait (TWW), and elective GP referral), and cases where patients’ diagnostic journey started in secondary care (Outpatient elective or Other inpatients). The remaining two routes include cases identified based on death certificates and those with no useful record on RTD (unknowns).13
Previous studies of RTD examined cases identified between 2006 and 2013, with no consideration of possible variation by ethnicity.13 In our study, we analysed primary care-linked patient records of 10 common cancers diagnosed between 2006 and 2016 to determine whether there are ethnic differences in the RTD. Given the above evidence, we hypothesized that the proportion of emergency diagnoses - associated with poorer cancer outcomes - will be higher among ethnic minorities compared to their British White counterparts.
What we found provides a slightly mixed picture.
As shown in Figure 1, the proportion of patients diagnosed via emergency route was highest in the Other ethnic group, followed by the White group. Patients of Asian, Black and Mixed ethnic backgrounds were less likely than White patients to follow the emergency route but had a higher proportion diagnosed via elective GP referral route. Black patients and those of Mixed heritage were more likely than White patients to be referred via TWW. The opposite was true of Asian and patients of Other ethnic backgrounds. Fewer patients of Black and Other group were diagnosed via screening relative to the White group. When explored by cancer sites, we found similar patterns of ethnic inequalities as illustrated in Figure 2.
What are the implications of our findings?
Our finding that the Asian and Black groups were less likely than the White group to follow the emergency diagnosis route was unexpected, given known ethnic inequalities in cancer outcomes.14 15 Indeed, previous studies showed that the Asian and Black groups have a greater frequency of multiple pre-referral consultations,16 17 which in reality, would portend a higher proportion of emergency diagnoses in both groups than the White group. They were likely than the White group to be GP-referred either electively or via the TWW route (mostly for Black patients). This finding suggests that awareness campaigns are working, and that doctors are responding positively to the same.
Black patients in our cohort, especially women with breast cancer, were less likely to be diagnosed via screening, consistent with their lower uptake of screening opportunities.18 19 This is where a change in approach might be necessary if we are indeed keen to improve outcomes of breast cancer in Black women.
Our findings regarding the Other group are worrying considering we know very little about this heterogenous group. Further research will need to unpick this group to fully understand the complex factors contributing to their higher risks of emergency diagnosis.
What these findings mean from a GP’s point of view
Dr Hamilton who recently retired from primary care practice said… “I actually think a research perspective is more illuminating. In nearly all research the ‘Other group’ is atypical in some way. This is likely to be the case here. We can only speculate – could they have had a first language for which it was difficult to get interpreters; could they have had other pressing problems - like seeking asylum - so they had less time to devote to health-seeking? Were they recent UK immigrants, who simply haven’t learned to navigate healthcare in the UK? All these are possible, but it does mean the ‘unusual’ do badly, and we GPs have to be on guard”.
Patient views on these findings
When shown the results from this study, Mr Alfred Samuels, who is part of our patient advisory group, was particularly taken aback by the finding regarding the Other group. This group represents a heterogeneous subset of our cohort, including those with unknown ethnicity but seems to have the highest proportion diagnosed via the accident and emergency department. Mr Alfred said “…there are a wide range of reasons why people may not state their ethnicity, meaning they would fall under the “Other” group in our research. “For some, a feeling that if they state that they are Black, for instance, they may be pushed to the back of the queue” We need to understand who these people are and why they are experiencing such poor service.
He wasn’t particularly surprised about our findings of lower proportions of Asian and Black patients diagnosed as emergencies. “You don’t find people from these groups in abundance the times I have attended. I have sometimes felt... I can’t be bothered to sit at A&E for hours. There is also an element that Black people don’t attend A&E because they self-doctor. Oh, it’s nothing. I will go to the doctor later’…later never comes”.
- Cancer Research UK. Cancer mortality for all cancers combined London2019 [Available from: https://www.cancerresearchuk.org/health-professional/cancer-statistics/mortality/all-cancers-combined accessed 01-06-2021.
- Saunders CL, Abel GA, Lyratzopoulos G. Inequalities in reported cancer patient experience by socio-demographic characteristic and cancer site: evidence from respondents to the English Cancer Patient Experience Survey. European journal of cancer care 2015;24(1):85-98. doi: 10.1111/ecc.12267 [published Online First: 2014/10/18]
- Lyratzopoulos G, Elliott M, Barbiere JM, et al. Understanding ethnic and other socio-demographic differences in patient experience of primary care: evidence from the English General Practice Patient Survey. BMJ Qual Saf 2012;21(1):21-9. doi: 10.1136/bmjqs-2011-000088 [published Online First: 2011/09/09]
- Roberts MJ, Campbell JL, Abel GA, et al. Understanding high and low patient experience scores in primary care: analysis of patients’ survey data for general practices and individual doctors. BMJ : British Medical Journal 2014;349:g6034. doi: 10.1136/bmj.g6034
- El Turabi A, Abel GA, Roland M, et al. Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey. British journal of cancer 2013;109(3):780-87. doi: 10.1038/bjc.2013.316 [published Online First: 2013/06/27]
- Waller J, Robb K, Stubbings S, et al. Awareness of cancer symptoms and anticipated help seeking among ethnic minority groups in England. British Journal of Cancer 2009;101 Suppl 2:S24-30.
- Marlow LAV, Robb KA, Simon AE, et al. Awareness of cancer risk factors among ethnic minority groups in England. Public Health 2012;126(8):702-09. doi: http://dx.doi.org/10.1016/j.puhe.2012.05.005
- Campbell C, Douglas A, Williams L, et al. Are there ethnic and religious variations in uptake of bowel cancer screening? A retrospective cohort study among 1.7 million people in Scotland. BMJ open 2020;10(10):e037011-e11. doi: 10.1136/bmjopen-2020-037011
- Niksic M, Rachet B, Warburton FG, et al. Ethnic differences in cancer symptom awareness and barriers to seeking medical help in England. British Journal of Cancer 2016;115(1):136-44. doi: 10.1038/bjc.2016.158
- Pearson C, Poirier V, Fitzgerald K, et al. Cross-sectional study using primary care and cancer registration data to investigate patients with cancer presenting with non-specific symptoms. BMJ Open 2020;10(1):e033008. doi: 10.1136/bmjopen-2019-033008
- Abel GA, Mendonca SC, McPhail S, et al. Emergency diagnosis of cancer and previous general practice consultations: insights from linked patient survey data. British Journal of General Practice 2017;67(659):e377-e87. doi: 10.3399/bjgp17X690869
- Renzi C, Lyratzopoulos G, Hamilton W, et al. Contrasting effects of comorbidities on emergency colon cancer diagnosis: a longitudinal data-linkage study in England. BMC Health Serv Res 2019;19(1):311-11. doi: 10.1186/s12913-019-4075-4
- Elliss-Brookes L, McPhail S, Ives A, et al. Routes to diagnosis for cancer - determining the patient journey using multiple routine data sets. British journal of cancer 2012;107(8):1220-26. doi: 10.1038/bjc.2012.408 [published Online First: 2012/09/20]
- Metcalfe C, Evans S, Ibrahim F, et al. Pathways to diagnosis for Black men and White men found to have prostate cancer: the PROCESS cohort study. British Journal of Cancer 2008;99(7):1040-45. doi: 10.1038/sj.bjc.6604670
- Rajan SS, Lim JN, Haq A. Late presentation and management of South Asian breast cancer patients in West Yorkshire, United Kingdom. Asian Pac J Cancer Prev 2011;12(6):1615-8. [published Online First: 2011/12/01]
- Lyratzopoulos G, Neal RD, Barbiere JM, et al. Variation in number of general practitioner consultations before hospital referral for cancer: findings from the 2010 National Cancer Patient Experience Survey in England. The Lancet Oncology 2012;13(4):353-65. doi: 10.1016/s1470-2045(12)70041-4
- Mendonca SC, Abel GA, Lyratzopoulos G. Pre-referral GP consultations in patients subsequently diagnosed with rarer cancers: a study of patient-reported data. British Journal of General Practice 2016;66(644):e171-e81. doi: 10.3399/bjgp16X683977
- von Wagner C, Baio G, Raine R, et al. Inequalities in participation in an organized national colorectal cancer screening programme: results from the first 2.6 million invitations in England. Int J Epidemiol 2011;40(3):712-8. doi: 10.1093/ije/dyr008 [published Online First: 2011/02/19]
- Massat NJ, Douglas E, Waller J, et al. Variation in cervical and breast cancer screening coverage in England: a cross-sectional analysis to characterise districts with atypical behaviour. BMJ Open 2015;5(7):e007735. doi: 10.1136/bmjopen-2015-007735