Title: What impact does missing Québec data have on national HIV surveillance data?

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Track 1.2.4: Quantifying and Interpreting biases in epidemiologic and Title: What impact does missing Québec have on national HIV? Authors: Kristina Lalonde Tomas 1, Raphaël Bitera 2, Michel Alary 2, Micheline Fauvel 3, Raymond Parent 2, Diane Sylvain 3, Maureen Hastie 3, Christiane Claessens 3, Jessica Halverson 1, Chris Archibald 1 1 Surveillance and Risk Assessment Division, Public Health Agency of Canada 2 Direction des risques biologiques et de la santé au travail, Institut national de santé publique du Québec 3 Laboratoire de santé publique du Québec, Institut national de santé publique du Québec Objective: To quantify the reduction in the proportion of cases with unknown exposure category and the difference in the exposure category breakdowns of HIV figures if exposure from the Institut national de santé publique du Québec (INSPQ) were included in the national HIV set. Background: National HIV/AIDS is coordinated by the Public Health Agency of Canada s (PHAC) Surveillance and Risk Assessment Division s (SRAD). HIV is reportable in all provinces and territories, although the degree of epidemiologic information collected and submitted varies. Québec s case reports to PHAC come from their -based system, which contains positive test reports, by age and sex. All Québec cases are classified in SRAD s set as Not Reported with respect to exposure category which contributes to the large proportion of cases at the national level with no known exposure category. An unknown exposure category at the national level consists of cases where the exposure category was NIR (No Identified Risk) or Not Reported. Methods: Québec s provincial HIV system Programme de de l infection par le VIH au Québec, in effect since April 2002, collects further epidemiological information, including exposure category and risk factor information, although recorded separately from the HIV test results information. This provincial system s was substituted for the in the national, and the exposure category breakdowns recalculated, in order to assess change in the proportion of unknown (i.e. NIR and Not Reported) cases and to quantify the resulting difference in exposure category breakdowns at the national level. It should be noted that the -based numbers published in the report reflect the minimum number of HIV-positive individuals, therefore are lower than the program numbers. Results: Unknown exposure category Currently Table 5A (see Table 1 below) of the National HIV/AIDS Surveillance report provides a breakdown of positive HIV test reports among adults across Canada, by exposure category. Cumulatively, a significant number of cases are assigned to the No Identified Risk (NIR) and Not Reported exposure categories. This is due, in large part, to Québec s submission from the provincial -based system, which does not include any risk factor or exposure category information, as well as roughly half of Ontario cases which are missing exposure category information. [For more information on Ontario, please see HIV/AIDS in Ontario 2008 report, (Ref)]. Historically, this has resulted in approximately one-half of national HIV cases each year which are missing an assigned exposure category.

Table 1 Number and percentage distribution of positive HIV test reports among adults ( 15 years) in Canada, by exposure category and year of test, using Québec s (currently Table 5A in report) Year of HIV Test Total Exposure Category n % n % n % n % n % n % n % n % n % MSM 510 4 513 39.6% 582 42.6% 542 41.0% 520 38.7% 536 4 593 43.7% 545 41.8% 4,341 41.0% MSM/IDU 21 1.6% 29 2.2% 31 2.3% 21 1.6% 27 2.0% 25 1.9% 21 1.5% 30 2.3% 205 1.9% IDU 304 23.9% 244 18.9% 272 19.9% 298 22.5% 258 19.2% 302 22.6% 273 20.1% 282 21.6% 2,233 21.1% Blood/blood products Recipient of Blood/Clotting Factor 2 0.2% 1 0.1% 1 0.1% 2 0.2% 0 0 1 0.1% 1 0.1% 8 0.1% Recipient of Blood 9 0.7% 12 0.9% 10 0.7% 10 0.8% 10 0.7% 9 0.7% 9 0.7% 9 0.7% 78 0.7% Recipient of Clotting Factor 0 3 0.2% 2 0.1% 2 0.2% 3 0.2% 0 0 0 10 0.1% Heterosexual contact Origin from an HIV- Endemic country 90 7.1% 100 7.7% 109 8.0% 100 7.6% 123 9.2% 84 6.3% 103 7.6% 72 5.5% 781 7.4% Sexual contact with a person at risk 163 12.8% 182 14.1% 174 12.7% 162 12.3% 159 11.8% 159 11.9% 149 11.0% 137 10.5% 1,285 12.1% NIR-Het 135 10.6% 154 11.9% 139 10.2% 129 9.8% 164 12.2% 150 11.2% 171 12.6% 192 14.7% 1,234 11.6% Other 40 3.1% 56 4.3% 46 3.4% 56 4.2% 78 5.8% 74 5.5% 38 2.8% 36 2.8% 424 4.0% NIR 54 49 65 64 74 87 90 123 606 Not Reported 1,092 1,100 1,052 1,061 1,095 992 1,149 958 8,499 Total 2,420 10 2,443 10 2,483 10 2,447 10 2,511 10 2,418 10 2,597 10 2,385 10 19,704 10 *Percentages based on totally number minus reports for which exposure category was not reported or for which there was no identified risk (NIR). When Québec s program, which does contain complete exposure category information, is substituted into the table, there is a significant decrease in the percentage of cases with unknown exposure category (Figure 1). Cumulatively from 2002 to 2009, there is a 52.2% decrease (from 46.2% to 22.1%) among the proportion of national adult cases within the NIR and Not Reported categories. This significantly increases the validity and quality of the national HIV, as they are more representative of Canadian trends, with nearly 80% of cases complete for exposure category.

Figure 1 Proportion of national adult HIV case reports with unknown exposure category (i.e. NIR and Not Reported), by two sources for HIV cases, 2002-2009 Proportion of national HIV test reports with unknown exposure category 6 5 4 3 2 1 All Cases: Not Reported/NIR Assignment of exposure category Tables 1 and 2 mimic Table 5A of the HIV and AIDS in Canada Surveillance Report, with Table 1 presenting the current table in the 2009 report, and Table 2 showing the table if Québec s program were substituted for its. The resulting proportional changes among each exposure category are shown in Table 3.

Table 2 Number and percentage distribution of positive HIV test reports among adults ( 15 years) in Canada, by exposure category and year of test, using Québec s program Year of Test Total Exposure Category n % n % n % n % n % n % n % n % n % MSM 780 40.4% 928 41.7% 946 43.9% 894 43.7% 879 42.6% 877 44.2% 962 47.6% 904 47.3% 7,170 43.9% MSM/IDU 47 2.4% 68 3.1% 69 3.2% 49 2.4% 60 2.9% 44 2.2% 45 2.2% 48 2.5% 430 2.6% IDU 467 24.2% 455 20.4% 405 18.8% 412 20.2% 371 18.0% 385 19.4% 336 16.6% 334 17.5% 3,165 19.4% Blood/blood products Recipient of Blood/Clotting Factor 2 0.1% 1 1 2 0.1% 0 0 1 1 0.1% 8 Recipient of Blood 14 0.7% 14 0.6% 15 0.7% 15 0.7% 13 0.6% 11 0.6% 9 0.4% 15 0.8% 106 0.6% Recipient of Clotting Factor 4 0.2% 6 0.3% 3 0.1% 4 0.2% 7 0.3% 5 0.3% 1 6 0.3% 36 0.2% Heterosexual contact Origin from an HIV- Endemic country 199 10.3% 247 11.1% 239 11.1% 222 10.9% 228 11.1% 179 9.0% 214 10.6% 159 8.3% 1,687 10.3% Sexual contact with a person at risk 193 1 224 10.1% 211 9.8% 199 9.7% 192 9.3% 185 9.3% 195 9.6% 163 8.5% 1,562 9.6% NIR-Het 187 9.7% 225 10.1% 216 1 190 9.3% 233 11.3% 223 11.2% 216 10.7% 239 12.5% 1,729 10.6% Perinatal 0 1 2 0.1% 1 2 0.1% 3 0.2% 6 0.3% 6 0.3% 21 0.1% Other 40 2.1% 56 2.5% 46 2.1% 56 2.7% 78 3.8% 74 3.7% 38 1.9% 36 1.9% 424 2.6% NIR 60 62 74 70 74 91 91 124 646 Not Reported 495 490 532 511 517 461 523 448 3,977 Total 2,488 10 2,777 10 2,759 10 2,625 10 2,654 10 2,538 10 2,637 10 2,483 10 20,961 10 *Percentages based on totally number minus reports for which exposure category was not reported or for which there was no identified risk (NIR). Proportional increases were observed in the men who have sex with men (MSM) (2.9%), men who have sex with men and inject drugs (MSM/IDU) (0.7%) and the heterosexual contact-origin from an HIV-endemic country (Het-Endemic) (3.0%) exposure categories. Proportional decreases were observed among the heterosexual contact with a person at risk (Het-Risk) (-2.6%) and injection drug use (IDU) (-1.7%) categories. Of note is the existence of 0.1% of cases attributed to Perinatal transmission in Table 2. While PHAC s current set does not reveal any adult Perinatal HIV cases, Québec s national program reports 21 cases between 2002 and 2009. These cases represent the previously diagnosed perinatal cases who have received a confirmation test since the inception of the Quebec HIV Surveillance Program in 2002.

Table 3 Proportional change among exposure categories for national HIV case reports among adults, using Québec s program in place of Québec s, cumulative 2002-2009 Total Men Women Exposure category Percent change Percent change Percent change MSM 2.9% 3.0% -- MSM/IDU 0.7% 0.9% -- IDU -1.7% -0.9% -3.5% Blood/blood products Recipient of Blood/Clotting Factor -0.1% Recipient of Blood -0.1% -0.1% Recipient of Clotting Factor 0.1% 0.1% 0.1% Heterosexual contact Origin from an HIV- Endemic country 3.0% 1.3% 9.2% Sexual contact with a person at risk -2.6% -2.3% -2.8% NIR-Het -1.1% -0.8% -1.6% Perinatal 0.1% 0.1% 0.2% Other -1.4% -1.3% -1.5% Sex When cases are further broken down by sex, the impact of changes in exposure category is more pronounced. For men, there are proportional increases among MSM (3.0%), Het-Endemic (1.3%) and MSM/IDU (0.9%), and proportional decreases among IDU (-0.9%), Het-Risk (-2.3%) and NIR-Het (-0.8%). Figures 2 to 5 illustrate the differences between the current and proposed incorporation of QC s public health, for the MSM, IDU, Het-Endemic and Het-Non-Endemic exposure categories. Figure 2 shows that MSM cases are currently underrepresented in the current PHAC set; the program from QC increases the national MSM proportion by up to 6% per year. Figure 3 shows that since 2004, IDU cases among men have been slightly overrepresented in national over the past five years, with greater difference observed in recent years. Figures 4 and 5 shows that Het-Endemic cases among men have been slightly underrepresented, by roughly 1% per year, while Het-Non-Endemic have been overrepresented at the national level, by 2-4% per year.

Figure 2 Difference in proportion of national cases attributed to MSM, among adult male HIV cases, by Québec s two HIV sources, 2002-2009 Proportion of all national HIV test reports among men attributed to MSM 7 6 5 4 3 2 1 Men: MSM program

Figure 3 Difference in proportion of national cases attributed to IDU, among adult male HIV cases, by Québec s two HIV sources, 2002-2009 Men: IDU Proportion of all national HIV test reports among men attributed to IDU 25.0% 2 15.0% 1 5.0% program

Figure 4 Difference in proportion of national cases attributed to Het-Endemic, among adult male HIV cases, by Québec s two HIV sources, 2002-2009 Men: Het Endemic Proportion of all national HIV test reports among men attributed to Het Endemic 7.0% 6.0% 5.0% 4.0% 3.0% 2.0% 1.0% program

Figure 5 Difference in proportion of national cases attributed to Het-Risk and NIR-Het, among adult male HIV cases, by Québec s two HIV sources, 2002-2009 Men: Het Non Endemic Proportion of all natioanl HIV test reports among men attributed to Het Non Endemic 25.0% 2 15.0% 1 5.0% program Among adult women, proportional increases were noted in the heterosexual contact exposure category (4.9%), but that figure varied when broken down into the different subcategories; a 9.2% increase was observed in the Het-Endemic cases, and 2.8% and 1.6% decreases among Het-Risk and NIR-Het, respectively. A proportional decrease of 3.5% was noted for the proportion of IDU cases among women. Figures 6 to 8 show the difference between the current national set (inclusion of Québec s lab ) compared to inclusion of QC s program for women, among the IDU, Het-Endemic and Het-Non-Endemic categories. Figure 6 shows that IDU cases among women have been overrepresented in national since 2004, by up to 6% per year. Figure 7 shows the difference in proportion of cases attributed to Het- Endemic cases among women; this category has been significantly underrepresented in national, by up to 12% per year. Figure 8 shows that Het-Non-Endemic cases (including both the Het- Risk and NIR-Het subcategories) are overrepresented in the current national set.

Figure 6 Difference in proportion of national cases attributed to IDU, among adult female HIV cases, by Québec s two HIV sources, 2002-2009 Women: IDU Proportion of all national HIV test reports among women attributed to IDU 45.0% 4 35.0% 3 25.0% 2 15.0% 1 5.0% program

Figure 7 Difference in proportion of national cases attributed to Het-Endemic, among adult female HIV cases, by Québec s two HIV sources, 2002-2009 Women: Het Endemic Proportion of all national HIV test reports among women attributed to Het Endemic 35.0% 3 25.0% 2 15.0% 1 5.0% program

Figure 8 Difference in proportion of national cases attributed to the Het-Risk and Het-NIR categories, among adult female HIV cases, by Québec s two HIV sources, 2002-2009 Women: Het Non Endemic Proportion of all national HIV test reports among womwn attributed to Het Non Endemic 6 5 4 3 2 1 program

Conclusion: Inclusion of Québec s exposure category from the INSPQ in the national HIV set is significant; the national set becomes more complete as the proportion of cases with unknown exposure category is reduced by over half. This renders the national HIV set much more complete and reliable, upon which we are able to draw more definitive conclusions regarding exposure category trends at the national level. This analysis also demonstrates that inclusion of exposure category, from Québec s INSPQ public health system, can alter the exposure category breakdowns at the national level from what is currently available and presented. While most of these changes are relatively small, they do change the national set, and the trends appearing therein. They also unearth some important findings about representation of the MSM category among men and the Het-Endemic category among women in particular, which warrant further investigation. The inclusion of Québec s INSPQ in the national set would be beneficial, contributing to improved completeness of information on exposure categories, as well as increased representation of the Canadian epidemic. This more comprehensive would offer a more accurate picture of HIV diagnoses in Canada. The feasibility of this inclusion is currently being investigated by INSPQ and PHAC.