HIV and AIDS, other sexually transmitted diseases, and tuberculosis in ethnic minorities in United Kingdom: Is surveillance serving its purpose?BMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7096.1747 (Published 14 June 1997) Cite this as: BMJ 1997;314:1747
- Kevin M De Cock, professor of medicine and international healtha,
- Nicola Low, lecturer in genitourinary medicineb
- a London School of Hygiene and Tropical Medicine, London WC1E 7HT
- b Department of Genitourinary Medicine, King's College School of Medicine and Dentistry, London
- Correspondence to: Professor De Cock
- Accepted 27 February 1997
Experience of disease differs across ethnic groups, and ethnicity is a relevant personal characteristic for descriptive epidemiology. Information about ethnicity and country of birth is omitted from the routine notification of many diseases. HIV infection and AIDS, other sexually transmitted diseases, and tuberculosis have different incidence rates in different ethnic groups in the United Kingdom. Omission of ethnic data from surveillance activities allows such differences in incidence to go undetected and unaddressed. Surveillance data that included ethnic details could guide interventions to reduce inequalities in health between different subpopulations.
Disease surveillance–the routine collection, analysis, and dissemination of data about the distribution of diseases–is essential for the planning and provision of services for preventing, treating, and controlling diseases.1 2 Surveillance data describe the occurrence of diseases in time, place, and person. In addition to age and sex, relevant personal characteristics may include ethnic group and country of birth, although these are omitted from many surveillance activities.
Three public health problems with wide variation in incidence and prevalence across subpopulations in the United Kingdom are HIV infection and AIDS, other sexually transmitted diseases, and tuberculosis. We discuss the need for epidemiological surveillance to incorporate data on ethnicity for more effective interventions for these unequally distributed diseases.
Ethnic minority groups in United Kingdom
The 1991 census was the first to document the ethnic distribution of the population of the United Kingdom. About 5.5% of the population belongs to self defined ethnic minority groups (table 1),3 although this may be an underestimate because of incomplete registration.4 The distribution of people from minority groups throughout the country is uneven, with most living in large urban centres.
In the following discussion we adhere whenever possible to the names for ethnic groups defined by the Office of Population Censuses and Surveys for the 1991 census3 and use other terms only to accommodate original data cited.
Disease, race, ethnicity, and surveillance
Ethnicity is a heterogeneous concept. It is not synonymous with race, and, for public health purposes, it should be considered in sociological rather than biological or anthropological terms.5 6 Epidemiological analyses based on ethnic data are open to criticism. Differences in the incidence of disease among ethnic groups may mask differences in socioeconomic factors that could be more important determinants of incidence than ethnicity.7 Also, self assigned ethnic groups can change over time, resulting in non-comparability of routine sources of data.8 Surveillance data can summarise ethnic differences in experiences of disease, which, without effective interventions, indicate wide and sometimes increasing inequalities,9 10 leading to further marginalisation of vulnerable groups. Misuse of ethnic data could lead to breaches of confidentiality, increased stigmatisation and discrimination, and proposals for inappropriate disease control measures.
On the other hand, failure to address ethnic differences may have severe consequences for public health. Ignoring ethnicity in surveillance may result in disparities in health going unnoticed, weakening efforts to prevent disease and giving false reassurance. For example, since non-whites contribute only 5.5% of the British population,3 overall public health targets for sexually transmitted diseases defined in the Health of the Nation11 could be met while unchanging or worsening trends in minorities went undetected.
Sensitivity about collecting ethnic data may be compounded by official reticence to investigate minority health issues. There is little political pressure to address such problems, and publicity about differences in disease incidence among population subgroups reflects unfavourably on official services.
Surveillance for HIV infection and AIDS
Surveillance for HIV infection and AIDS is conducted by the Public Health Laboratory Service Communicable Disease Surveillance Centre and the Scottish Centre for Infection and Environmental Health. Data are derived from voluntary confidential reports.12 Information is also provided by unlinked, anonymous testing for HIV infection in various groups, including childbearing women and attenders at sexually transmitted disease (genitourinary medicine) clinics13 and by monitoring results from voluntary tests for HIV in selected laboratories. Surveillance reports are published on a monthly basis, with more detailed quarterly tables being circulated to a restricted readership.
Surveillance of AIDS cases, which has included ethnic status since 1989 (white, black, Asian or oriental, other), provided indirect evidence of the high proportion of cases in black Africans–the largest ethnic group among people with AIDS who were thought to have acquired HIV infection from heterosexual sex with a partner abroad.14 The categories for ethnic groups specified by the Office of Population Censuses and Surveys have been adopted for surveillance of AIDS cases since 1994.15 Data on ethnicity are not available for the unlinked anonymous studies of seroprevalence except for limited information on geographic origin of participants in surveys of sexually transmitted disease clinics that have recently been published.13
Table 2 shows the crude incidence of AIDS in adults and children in the United Kingdom by ethnic group, and table 3 shows the crude incidence of AIDS from presumed heterosexually acquired HIV infection in black African and non-African adults. The higher crude incidence of AIDS in adults of black minority groups are confounded by age and residence; minority populations are younger and a greater proportion live in greater London, where the incidence of AIDS is higher than in the rest of the United Kingdom.
The age adjusted relative risk for AIDS in black African adults in 1994-5 was 20 compared with non-African adults (indirect standardisation to age specific rates of AIDS in the whole United Kingdom; data not shown). For black African children, the annual incidence of AIDS was 355 times greater than in all other children combined, reflecting ethnic differences in rates of heterosexually acquired HIV infection. The age adjusted relative risk for AIDS from presumed heterosexually acquired HIV infection in black African adults in 1994-5 was 154 compared with non-Africans (indirect standardisation; data not shown).
Surveillance data for AIDS in adults reflect much earlier patterns of HIV transmission. Our inability to link ethnic status and country of birth to data on the seroprevalence of HIV and trends in prevalence limits our understanding of recent patterns of heterosexual transmission of HIV. The current unlinked anonymous serosurveillance cannot detect changes in specific subgroups; if HIV infection were introduced, for example, by heterosexual travellers returning from the increasingly affected Indian subcontinent, this would not be recognised in a timely fashion. There are no mechanisms for differentiating changes in rates of HIV infection in indigenous versus foreign born people, for following trends in specific subgroups, or for targeting preventive measures to those ethnic groups in which new cases of HIV infection are appearing.
At present, groups most in need of HIV counselling and testing for provision of zidovudine in pregnancy to prevent transmission from mother to infant16 are defined by the ethnicity of paediatric AIDS cases or by other indirect means.17 Evaluation of services for women most at risk of infecting their infants is handicapped,18 and predicting the need for prevention and treatment of paediatric HIV infection is restricted because the blinded testing of childbearing women is conducted without ethnic data. Since ethnicity is now routinely recorded in data from surveillance of AIDS cases there is no obvious reason why this is not also done for serosurveillance.
Surveillance for sexually transmitted diseases
Data on sexually transmitted diseases are provided quarterly from sexually transmitted disease clinics in England and Wales to the Department of Health (since July 1996 to the Public Health Laboratory Service Communicable Disease Surveillance Centre) by means of specific reporting forms (KC60).19 Aggregated information is transmitted about disease episodes, diagnosis, sex of affected people, and, for some diagnoses, age and homosexually acquired infections. From 1996 the data will be compiled and analysed by the Communicable Disease Surveillance Centre, which also collates laboratory reports and results of other studies and surveys. Data on ethnic group are not routinely collected. Little information exists about sexual behaviours and attitudes of people from minority ethnic groups, and the national survey of sexual attitudes and lifestyles included too few minority respondents to allow detailed ethnic specific analyses.20
Sexually transmitted diseases are distributed heterogeneously in the population, with the highest rates occurring in London and the south east.21 Low et al showed that the incidence of gonorrhoea in south London was eight to nine times higher in non-whites (all black, Asian, and other non-white groups combined) than in whites in all age and sex strata, and these ethnic differences persisted after adjustment for socioeconomic status.22 The disproportionately high incidence of gonorrhoea in black heterosexual men is illustrated by figure 1, which shows the ethnic distribution of heterosexual men treated for gonorrhoea at an inner city London hospital and that of male residents of the surrounding area. Increased rates of gonorrhoea have also been reported for Afro-Caribbean people living in Leeds, among whom peak age specific incidence rates were 12 times higher for women and 54 times higher for men than among white people.23
Sexually transmitted diseases increase the risk of transmission and acquisition of HIV infection in women and men,24 but otherwise cause severe complications predominantly affecting women. These include pelvic inflammatory disease, recurrent pelvic pain, infertility, ectopic pregnancy, increased fetal wastage, and increased risk of carcinoma of the cervix.25 Since the highest rates of sexually transmitted diseases in women occur in non-white females aged 15-19 years, the severe but unquantified complications of sexually transmitted diseases must be suffered disproportionately by young black women in inner city areas.
Lack of data on ethnicity and country of birth prevent targeting of efforts for preventing sexually transmitted diseases such as strengthening of treatment services, more intense tracing of contacts, and sexual health education for the heavily affected groups. Data for specific subgroups would also help for advising travellers from minority groups who may be potentially exposed to HIV infection overseas.
Surveillance for tuberculosis
Reporting of tuberculosis by clinicians is performed on a statutory basis to local consultants in communicable disease control, who provide weekly returns to the Office of National Statistics. Additional reports come from laboratories and from death registrations. Definitive data on tuberculosis rates are published by the Office of National Statistics. Information reported by clinicians includes the age and sex of patients, date of diagnosis, and site of disease. Data on ethnicity are examined only in national surveys of notified cases undertaken on a five yearly basis. The last survey, conducted in 1993, also aimed to examine the role of HIV infection in the epidemiology of tuberculosis.26
Ormerod has summarised the data from these five yearly surveys, including results from 1993.27 Figure 2 shows the disproportionately high rates of tuberculosis in different non-white groups and the changing trends. Between 1988 and 1993 the incidence of tuberculosis rose by 20% in Pakistanis and Bangladeshis, and by 124% in black Africans. In 1993 the crude incidence in black Africans was 135/100 000, 31 times higher than in whites.
HIV infection is the strongest risk factor known for tuberculosis.28 Because so few patients with tuberculosis are tested for HIV infection it is currently impossible to know what proportion of cases of tuberculosis in the United Kingdom is attributable to HIV, both overall and within specific minority groups. Tuberculosis accounted for 27% of initial diagnoses of AIDS in black Africans in London compared with 5% in non-Africans29; the minimum annual incidence of tuberculosis associated with HIV in black Africans is thus 27% of the incidence of AIDS (table 2). At least 19% of tuberculosis cases in black Africans are therefore likely to be in HIV infected people ((27% of African incidence of AIDS/African incidence of tuberculosis)x100).
The increased incidence of tuberculosis in specific subpopulations went undetected between the five yearly surveys because ethnic specific data were not collected routinely. Current surveillance practice would not detect the emergence of HIV associated tuberculosis in other populations at risk such as Asians, nor changes in tuberculosis epidemiology such as an increasing proportion of cases independent of HIV infection in foreign born people, as has occurred in the United States.30 There have been repeated calls for routine notification of ethnicity and country of birth for all persons with tuberculosis31 32 and the offering of HIV testing to all affected people,33 and collection of data on ethnicity is included in proposals for enhanced routine notification of tuberculosis in England and Wales (J Watson, personal communication). Data on ethnicity were important in defining and evaluating the response to epidemic tuberculosis, much of it multidrug resistant, in New York City.34
Sexual behaviour and sexually transmitted diseases fuel the transmission of HIV,24 which leads to opportunistic illnesses that include tuberculosis.28 To understand incidence rates, trends, and interactions of these diseases, we need surveillance data that take account of relevant descriptive information, including ethnicity and country of birth. It is also important that data sets for specific diseases can be matched in a confidential fashion (such as on soundex code35 and date of birth) to study epidemiological associations.
The differences in disease rates between ethnic groups in the United Kingdom are of similar size, and in some cases greater, as disparities between blacks and whites in the United States, where surveillance routinely documents ethnicity.5 The roots of these inequalities are complex and include exposure to infections abroad, socioeconomic disadvantages, unequal access to health services, and other factors such as behaviour. The size of these disparities in health indices in the United Kingdom may cause surprise and would be widely discussed if they applied to other essentials such as education, housing, or employment.
Surveillance systems in the United Kingdom are sometimes failing to capture and communicate differences in disease incidence of more than 20-fold in different subpopulations. Despite the potential for misuse or misinterpretation of ethnic data, descriptive epidemiology for public health must be objective and complete. The development of interventions to reduce health inequalities among different ethnic groups in the United Kingdom–as for HIV infection and AIDS, other sexually transmitted diseases, and tuberculosis–requires data on ethnicity and country of birth to be included in routine surveillance activities.
We thank Dr David Barlow for generously sharing data; and Dr Kevin Fenton, Dr Judith Stephenson, Professor Michael Adler, Professor Sebastian Lucas, Mrs Sue Lucas, Dr John Watson, Dr Michael Catchpole, Mrs Janet Mortimer, Dr Angus Nicoll, and other colleagues for review of the manuscript and discussion. Opinions expressed are those of the authors and do not necessarily represent those of persons acknowledged.
Conflict of interest: None.