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Eurosurveillance, Volume 5, Issue 2, 01 February 2000
Articles
HIV reporting in western Europe : national systems and first European data

Citation style for this article: Infuso A, Hamers FF, Downs AM, Alix J. HIV reporting in western Europe : national systems and first European data . Euro Surveill. 2000;5(2):pii=29. Available online: http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=29
Andrea Infuso, Françoise F. Hamers, Angela M. Downs, Jane Alix

European Centre for the Epidemiological Monitoring of AIDS (EuroHIV)*, Institut de Veille Sanitaire, Saint-Maurice, France, for the national correspondents of the European HIV reporting system in western European countries

(JP. Klein, Austria; A. Sasse, Belgium; E. Smith, Denmark; P. Holström, Finland; F. Lot, France; O. Hamouda, Germany; L. Tzala, Greece; H. Briem, Iceland; J. Devlin, Ireland; B. Suligoi, Italy; I. Robert, Luxembourg; J.K. Van Wijngaarden, the Netherlands; O. Nilsen, Norway; M.T. Paixão, Portugal; I. Noguer, Spain; M. Arneborn, Sweden; M. Gebhardt, Switzerland; N. Macdonald, United Kingdom).


Introduction

AIDS case reporting has been an essential tool for monitoring HIV infection in western Europe. Recent trends in AIDS have been affected by improved antiretroviral treatments that delay HIV disease progression, however, and no longer serve as indicators of HIV transmission trends. Reporting of all diagnosed HIV infections is increasingly advocated as a central component of surveillance (1). A European HIV reporting system including 39 countries of the World Health Organization (WHO) European Region was set up in 1999 to complement AIDS reporting. This paper describes national HIV reporting systems in western European countries and presents the first data collected

Methods

The characteristics of national HIV reporting were explored in a preliminary survey in 1997 (2) and updated in 1999. Individual anonymous data (or, if not possible, aggregate data) on HIV infections diagnosed at any clinical stage and reported by the end of 1998 were collected from national HIV/AIDS surveillance institutes taking part in European AIDS reporting. The number of HIV cases reported in 1998 was compared to the number of AIDS cases reported in the same year. Western Europe was defined as the 15 countries of the European Union plus Iceland, Norway, and Switzerland

Results

Reporting systems

In 1999, HIV reporting was taking place in 15 of the 18 countries of western Europe (table 1). National systems for HIV reporting existed in 13 of these countries and was implemented in six of the 21 regions in Italy and in the area of Arnhem in the Netherlands. Regional systems existed in 13 of the 23 regions of France until the end of 1998. HIV reporting had not been implemented in Austria and Ireland. National reporting systems are planned in France and in Ireland and regional systems in Italy and the Netherlands will be expanded in the near future.

Table 1. Characteristics of HIV reporting systems in western European countries

 

Start of reporting

Legal status

Source of reports 

Nr of  laboratories reporting (potentially)

Case identifiers  *

Country

Date of  birth

Personal information 

Austria

-

-

-

(4)

Belgium

1986

V

L

8

d/m/y

initials

Denmark

1990

M

L, C

6

y

none

Finland

1986

M

L, C

20

d/m/y

part of SSN

France (13 regions) **

1988-1996)

V

L,C

na

m/y

none

(nationwide)

planned

M

L,C

5000

d/m/y

to be defined

Germany

1988

M

L

153

y

none

1998

V

C

-

y

name based

Greece

1998

M

L, C

9

d/m/y

initials

Iceland

1985

M

L, C

1

m/y

name (from 1999)

Ireland

planned

-

-

1

Italy (7 regions)

1985-1999

M

L

na

d/m/y

name based ***

Luxembourg

1999

V

L

1

m/y

initials

Netherlands

1989

V

L

na

y

initials

Norway

1986

M

L, C

5

m/y

aucune

Portugal

1983

V

C

(10)

d/m/y

initials

Spain

1999

V

L, C

na

d/m/y

initials

Sweden

1985

M

C

(5)

m/y

part of SSN

Switzerland

1985

M

L, C

8

d/m/y

initials (from 1999)

United Kingdom

1984

V

L, (C from 2000)

500

d/m/y

« soundex » code

V= voluntary ; M= mandatory
L = laboratories ; C = clinicians
na = not available
d/m/y = day/month/year 
SSN = social security number
* in addition to sex, all countries
**  all regional systems ended in 1998
*** not standardised across regions

Thirteen countries began reporting before 1991 and two countries (Greece and Luxembourg) in 1999. Spain began a gradual process to implement national HIV reporting in 1999. Reporting is mandatory in eight countries, in most Italian regions, and in the national system planned in France. Cases of HIV infection are reported by laboratories only in four countries, by clinicians only in two countries, and by both in ten countries. Clinician reporting has recently been added to laboratory reporting in Germany (1998) and in the United Kingdom (UK) (2000).

Apart from Iceland, none of the national HIV reporting systems records named cases. Twelve countries eliminate duplicate reports and carry out linkage with other sources of data (e.g. AIDS or death reports) at national level using date of birth (or part thereof), sex, and other personal information, such as parts of the name (nine countries and most regions in Italy) or parts of the social security number (two countries). Three systems (Denmark, Norway, and the laboratory reporting system in Germany) collect no personal information other than date of birth and sex.In these countries, linkage with other data sets is impossible and HIV reports of cases with a history of previous positive tests are excluded from national statistics to reduce repeat counting of the same case. Recent or planned changes in the personal information collected on HIV reports include a shift to named reporting (Iceland, 1999), and the introduction of name initials (Switzerland, 1999), full date of birth (Germany, planned), and the social security number (Denmark, under discussion).

All countries collect data on the route of HIV transmission and clinical stage, using similar categories. Other data often collected include geographic origin (nationality, country of birth, or country of permanent residence), probable date and place of infection, previous negative and positive HIV tests, reasons or circumstances of testing, and indicators of disease progression (such as CD4 lymphocyte count).

Reporting data

Data on HIV infection for 1998 were available from 11 countries, the French region of Aquitaine (2.8 million, 4.6% of the total population) and the Lazio and Trento regions of Italy (5.6 million, 10% of the population) (table 2), which together represent 201 million (52%) of the 388 million population of western Europe. A total of 8104 cases of HIV infection and 4088 AIDS cases were reported in 1998. Numbers of cases of HIV infection per million population ranged from 16 in Finland to 90 in Switzerland and 94 in the two Italian regions combined. All countries reported more cases of HIV infection than AIDS, with ratios ranging from 1.5 in Switzerland to 4.5 in Belgium. Under 5% of cases in Norway and the UK were reported without transmission category and over 30% in Greece, Italy, and Switzerland. Among the 6444 cases reported with known transmission category, 44% were homo/bisexual men, 42% heterosexuals, 10% were injecting drug users (IDUs), and 2% had acquired infection vertically. As data from countries in southern Europe with large epidemics mainly among IDUs are very limited, these data are not representative of the situation in Europe as a whole.

Table 2. HIV reporting data in western Europe – end 1998

 

Cumulative HIV cases reported to end 1998

Cases reported in 1998

Country

Data from

 total number

Nr

HIV rate per million

Ratio HIV:AIDS

Belgium

1986

11 067

740

73

4.5

Denmark

1990

2482

179

34

2.5

Finland

1986

945

801

16

4.0

Aquitaine (France)

1988

3719

217*

78

3.7

Germany (labs)

1993

13 359

2247

27

2.4

Greece

1998

1917 **

278*

26

1.9

Iceland

1985

121

8

29

4.0

Lazio + Trento (Italy)

1985

18 019

535

94

1.7***

Luxembourg

1985

397

301

71

3.0

Norway

1986

1869

981

22

2.5

Portugal

1983

10 012

na

-

-

Sweden

1985

4911

246

28

3.9

Switzerland

1985

23 821

657

90

1.5

United Kingdom

1984

33 329

2789

48

2.9

Total

125 968

8104

40

2.0

* Data by year of diagnosis
** Includes retrospective reporting before 1997
*** AIDS data by year of diagnosis, not adjusted for reporting delays
na : not available

Discussion

HIV infection reporting systems are an established part of HIV surveillance in most countries in western Europe. In the three countries that account for two thirds of the cumulative total of reported AIDS cases, however, HIV reporting either began only recently (Spain, 1999) or has yet to be implemented at national level (France, Italy). Differences exist in the organisation of reporting and in the type and format of information collected. As with AIDS, reports of HIV infection from clinicians provide detailed epidemiological and clinical information. Since diagnosis of HIV infection is less concentrated in specialised centres, HIV infection reporting by clinicians may be less complete than AIDS reporting, for which 75% to 100% of cases are estimated to be reported (3). For this reason, in most countries cases of HIV infection are (also) reported from laboratories, which are usually few in number and may provide a more exhaustive count of diagnosed cases (e.g., higher than 95% in Denmark (4))

The elimination of duplicate reports and the ability to match reports of HIV infection with other data sets are essential requirements of an effective HIV reporting system. This implies the collection of personal information which, in turn, creates a potential risk for breaches of confidentiality. Among the measures taken to ensure data security, most western European countries exclude names from the collected personal information in HIV reports. In the UK, the use of ‘soundex’ codes (based on the surname) and date of birth provides efficient identification of duplicates and linkage with AIDS case reports (5). The use of initials, date of birth, and sex in a simulation made on the nominal AIDS data set in Spain resulted in a very low proportion of truly new cases being erroneously classified as duplicates (0.1%) (I Noguer, personal communication). When non nominal HIV reporting is implemented, the efficiency of matching and removal of duplicates also depends on the completeness of the identifying information collected (6), however, and on the (increasing) size of data sets. Further evaluations of this issue are needed in Europe.

Reporting of HIV infection must be interpreted with caution, taking into account other available epidemiological data, because these reports do not provide a direct measurement of the incidence or prevalence of HIV infection. The proportion of HIV infected individuals who are diagnosed and reported varies according to the phase of the epidemic (4), HIV testing patterns (7), and characteristics of surveillance systems. In countries where HIV infection reporting began early, the cumulative number of HIV reports can provide a minimum estimate of prevalence if mortality data are also available or can be estimated. Numbers of cases of HIV infection reported in 1998 are higher than numbers of AIDS reports. HIV reporting is helping to improve assessment of the scale and extent of recent HIV transmission in the population. Annual numbers of HIV infections reported in the 1990s were relatively stable in some countries and decreased in others (not shown here) (8). The comparison of HIV and AIDS reporting data suggests that the level of HIV transmission has remained relatively stable in recent years and that the sudden decline of AIDS incidence has been due mainly to the effect of treatments. Overall, sexual transmission accounts for the vast majority of reported HIV infections, but the countries with the largest numbers of HIV infected IDUs are poorly represented in these data. HIV trends by transmission group are difficult to interpret in some countries because the proportion of cases with unknown mode of transmission is high and has changed over time

Four countries (Belgium, Greece, Luxembourg, United Kingdom) already provided to the European system complete individual data on cases reported since 1997, which include clinical stage at diagnosis (around 80% of cases reported in 1998 were diagnosed before AIDS), the probable year of infection (estimated for around 10% of cases) and follow-up information on AIDS and death. These data should contribute to a better description of recent HIV transmission trends, of disease progression and of care at the population level.

HIV reporting has been recently introduced, expanded, or improved in most western European countries and further developments are underway. In particular, new and planned systems in southern countries should contribute to a more representative surveillance picture of the HIV epidemic in Europe. The widespead participation in the European HIV reporting system reflects strong motivation for the collaborative development of this surveillance tool. The current momentum of change should facilitate better standardisation of surveillance definitions and practices, which remains a major challenge for international surveillance.

* The European Centre for the Epidemiological Monitoring of AIDS (EuroHIV) is supported by the European Commission (contract VS/1999/5227 (99CVVF4-023))


References

1. Hamers FF, for the group of experts and national coordinators of HIV/AIDS surveillance from the countries of WHO European Region. Recommendations for HIV surveillance in Europe. Eurosurveillance 1998; 3: 51.2. European Centre for the Epidemiological Monitoring of AIDS. HIV testing and case reporting in Europe. HIV/AIDS surveillance in Europe: Report No. 56. St Maurice: CESES, 1997: 40-7.

3. European Centre for the Epidemiological Monitoring of AIDS. Completeness of AIDS reporting in Europe. HIV/AIDS surveillance in Europe: Report No. 49. St Maurice: CESES, 1996: 30-33.

4. Smith E, Jensen L, Wachmann CH. Patterns and trends in clinically recognized HIV seroconversions among all newly diagnosed HIV-infected homo-/bisexual men in Denmark, 1991-1994. AIDS 1996; 10: 765-70.

5. Mortimer JY, Salathiel JA. Soundex codes of surnames provide confidentiality and accuracy in a national HIV database. Commun Dis Rep CDR Rev 1995; 5: R183-6.

6. CDC. Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR Morb Mortal Wkly Rep 1999; 48(RR-13): 1-31.

7. De Cock KM, Johnson AM. From exceptionalism to normalisation: a reappraisal of attitudes and practice around HIV testing. BMJ 1998; 316: 292-5.

8. European Centre for the Epidemiological Monitoring of AIDS. HIV/AIDS surveillance in Europe. Report No. 61. Saint Maurice: CESES, 1999.



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