SHM: Monitoring of HIV in the Netherlands

1. SHM: Monitoring of HIV in the Netherlands Frank de Wolf, Ard van Sighem • Aim • Data collection • Analysis en reporting • Results • Conclusions

2. Aim SHM • Contribute to knowledge of HIV in the Netherlands through study of: • The course of infection in people with HIV • The effect of treatment of people with HIV

3. Actual practice • Contribute to knowledge of HIV in the Netherlands through study of: • The course of infection in people with HIV • The effect of treatment of people with HIV • We monitor the treatment of each and every man or woman with HIV in the Netherlands • We map out the HIV epidemic in the Netherlands

4. Stakeholders • Contribute to knowledge of HIV in the Netherlands through study of: • The course of infection in people with HIV • The effect of treatment of people with HIV • We monitor the treatment of each and every man or woman with HIV in the Netherlands • We map out the HIV epidemic in the Netherlands • Individuals with HIV • Treating physicians • HIV care policy makers • HIV researchers

5. How Per HIV Treatment Centre: • Collection of data from all people with HIV in care • In collaboration with the HIV-treating physician, who supervises the actual collection of data from patients for whom he provides HIV care • 26 hospitals throughout the country are acknowledged by the Ministry of Health as HIV treatment Centre

6. Data collection: 5 steps

7. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Treating physician SHM enrolment database Patient Patient’s medical file Material Other laboratories Clinical laboratories Diagnostic procedures Step 1: Registration and Entry

8. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Fax: ID code = ‘M-number’ Treating physician SHM enrolment database Patient National SHM database Patient’s medical file Data collectors Material Other laboratories Clinical laboratories Diagnostic procedures Step 2: Monitoring ID code or M number

9. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Fax: ID code = ‘M-number’ Treating physician SHM enrolment database Patient National SHM database Patient’s medical file Data collectors Material Other laboratories Clinical laboratories Diagnostic procedures Step 3: Collection of patient data

10. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Fax: ID code = ‘M-number’ Treating physician SHM enrolment database Patient National SHM database Patient’s medical file Data collectors Material Data monitors Other laboratories Clinical laboratories Diagnostic procedures Step 4: Data Quality Control

11. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Fax: ID code = ‘M-number’ Treating physician SHM enrolment database Patient National SHM database Patient’s medical file Data collectors Material Data monitors Analysis Discrepancies Other laboratories Clinical laboratories Diagnostic procedures SHM researchers Monitoring Report & Research output Step 5: Data preparation and analysis

12. Routine patient care Data collection & QC Data storage & analysis Enrolment- /discontinuation form Fax: ID code = ‘M-number’ Treating physician SHM enrolment database Patient National SHM database Patient’s medical file Data collectors Material Data monitors Analysis Discrepancies Other laboratories Clinical laboratories Diagnostic procedures SHM researchers Monitoring Report & Research output Computerisation

13. Analysis and Reporting

14. Individual patient reporting

15. Reporting per Treatment Centre

16. National Reporting

17. International Reporting

18. International Reporting 2011: 40 papers

19. Results

20. Cascade of HIV care

21. Effect of antiretroviral treatment of people with HIV Gras L, et al; J Acquir Immune Defic Syndr 45 ( 2) 2007 Gras L, et al; Monitoring Report 2011, Stichting HIV Monitoring, Amsterdam, November 2011

22. Effect of treatment on the course of the HIV epidemic status quo N=1470 immediate cART N=917 annual testing N=629 reduced risk N=139 Bezemer et al, AIDS (2008); Van Sighem et al (2011)

23. Effect of PrEP on the number of new HIV infections 28% 33% 45% 46% # infections 2010-2019 No PrEP New MSM All MSM 5% All MSM 10% New MSM + 5% all MSM Van Sighem A, et al. State of the cART (2012)

24. Increasing plasma HIV-RNA over time

25. New HCV diagnoses amongst HIV-infected patients • Increase in HCV testing • Increase in number HCV positives with a last HCV negative test result • Percentage positive declined to 4% per year • Percentages tested positive for HCV declined (stratified by risk group) Smit C, et al. AIGHD HCV Symposium (2012)

26. Conclusions

27. HIV monitoring is a must • HIV Monitoring is crucial for assessing the quality of care for people with HIV, including the effect of antiretroviral treatment and the development of resistance • HIV monitoring is needed for our understanding of the changes in the HIV epidemic • Mandatory collection of anonymised patient data is essential for HIV monitoring

28. Patient data collection and QC Manager: Sima Zaheri Patient Registration: Rosalind Beard Data Collection: Mieke van den Akker, Yvonne Bakker, Marjo Broekhoven-van Kruijne, Els Claessen, Chantal Deurloo-van Wanrooij, Leonie de Groot-Berndsen, Carla Lodewijk, Brid Peeck, Yolanda Ruijs-Tiggelman, Els Tuijn-de Bruin, Lia Veenenberg-Benschop, Tieme Woudstra. Data Monitoring & QC: Marieke Berkhout, Rosalie van den Boogaard, Shula Grivell, Mariska Hillebregt, Pytsje Hoekstra, Anna Jansen, Viola Kimmel, Anna de Lang, Bianca Slieker, Nynke Wijnstok Data preparation and analysis Head:Frank de Wolf Research staff:Daniela Bezemer, Luuk Gras, Ard van Sighem, Colette Smit, Rebecca Holman Anouk Kesselring, PhD students: Esther Engelhard, Gonneke Hermanides, Rob van den Hengel Office, Administration, Communication Manager: Danielle de Boer Office: Mireille Koenen, Inge Bartels Administration: Irene de Boer, Henk van Noort Communication: Louise Dolfing-Tompson, Anneke Nollen Director Frank de Wolf SHM