AIDS Therapy Evaluation in the Netherlands (ATHENA) national observational HIV cohort: cohort profile

Abstract

Purpose: In 1998, the AIDS Therapy Evaluation in the Netherlands (ATHENA) national observational HIV cohort was established to demonstrate the lifesaving effectiveness of triple combination antiretroviral therapy, including HIV-protease inhibitors, that had recently been made available for clinical use. Subsequently, the HIV Monitoring Foundation was established by the Dutch Ministry of Health, Welfare and Sport to continue ATHENA as an open cohort in order to continue the registration and monitoring of all HIV-positive people as an integral part of HIV care in all 26 HIV treatment centres in the Netherlands.

Participants: To date, a total of 25 036 participants have been enrolled in the cohort, with 263 600 person-years of follow-up. As of 1 January 2017, 19 035 HIV-1-positive participants were known to be in care: 18 824 adults (81% men and 19% women) and 211 children (47% boys and 53% girls). The remaining 6001 participants had either died (46%), were lost to care (29%) or had moved abroad (25%).

Findings to date: Today, with over 20 years of follow-up, the ATHENA cohort has provided extensive knowledge on HIV treatment, comorbidities and coinfections and created insight into the transmission dynamics of the HIV epidemic.

Future plans: ATHENA continues to enrol and monitor HIV positive people entering HIV care in the Netherlands. Future research will continue to provide tangible input into HIV care and prevention policies in the Netherlands and internationally.

Keywords: HIV & AIDS; epidemiology; infectious diseases; public health; virology.

Figure 1

HIV treatment centres in the Netherlands. Legend: adult HIV treatment centres: (1) Noordwest Ziekenhuisgroep, Alkmaar; (2) Flevoziekenhuis, Almere; (3) Academic Medical Center of the University of Amsterdam (AMC-UvA), Amsterdam; (4) DC Klinieken Lairesse – HIV Focus Centrum, Amsterdam; (5) OLVG, Amsterdam; (6) MC Slotervaart, Amsterdam; (7) Medisch Centrum Jan van Goyen (MC Jan van Goyen), Amsterdam; (8) VUmc, Amsterdam; (9) Rijnstate, Arnhem; (10) HagaZiekenhuis (Leyweg site), Den Haag; (11) HMC (Haaglanden Medisch Centrum), Den Haag; (12) Catharina Ziekenhuis, Eindhoven; (13) Medisch Spectrum Twente (MST), Enschede; (14) Admiraal De Ruyter Ziekenhuis, Goes; (15) Universitair Medisch Centrum Groningen (UMCG), Groningen; (16) Spaarne Gasthuis, Haarlem; (17) Medisch Centrum Leeuwarden (MCL), Leeuwarden; (18) Leids Universitair Medisch Centrum (LUMC), Leiden; (19) MC Zuiderzee, Lelystad; (20) Maastricht UMC+ (MUMC+), Maastricht; (21) Radboudumc, Nijmegen; (22) Erasmus MC, Rotterdam; (23) Maasstad Ziekenhuis, Rotterdam; (24) ETZ (Elisabeth-TweeSteden Ziekenhuis), Tilburg; (25) UMC Utrecht (Universitair Medisch Centrum Utrecht), Utrecht; and (26) Isala Zwolle. Paediatric HIV treatment centres: (A) Emma Kinderziekenhuis (EKZ), AMC-UvA, Amsterdam; (B) Beatrix Kinderziekenhuis (BKZ) UMCG, Groningen; (C) Erasmus MC-Sophia Kinderziekenhuis, Rotterdam; and (D) Wilhelmina Kinderziekenhuis (WKZ), UMC Utrecht, Utrecht.

Figure 2

Time between HIV diagnosis and initiation of combination antiretroviral therapy (cART) among people initiating cART by year of entry into care.

Figure 3

Increasing age distribution of the ATHENA cohort over time. Legend: this figure includes all HIV-1-positive people in clinical care. In 1996, 14% of the patients in care were younger than 30 years of age, whereas 11% were 50 years or older. In 2016, these proportions were 7% and 46%, respectively, while 16% of patients in care were 60 years of age or older. The proportion of patients in clinical care as of 31 December of each calendar year is shown according to those who were <30 years of age, 30–39 years, 40–49 years, 50–59 years and 60 years or older. ATHENA, AIDS Therapy Evaluation in the Netherlands.

Figure 4

Continuum of HIV care for the total estimated HIV-positive population in the Netherlands in 2016.

Figure 5

Hepatitis C continuum of care. Legend: out of a total of 1883 individuals linked to HIV care and diagnosed with HCV, 1439 individuals (76%) were retained in care, and of these 1439, 1302 (90%) had ever received treatment for HCV. Of the 1302 individuals treated for HCV, 1247 (96%) had completed HCV treatment and had data available to calculate their HCV treatment response. Overall, 1137 of the 1247 (91%) individuals who completed treatment had achieved an SVR. As a result, 302 of the 1439 individuals (21%) who were alive and in care as of 1 May 2017 in one of the Dutch HIV treatment centres remained untreated (n=137), not successfully treated (n=85), were still being treated or had insufficient time after treatment discontinuation to allow SVR calculation (n=80). All 80 individuals in whom SVR could not yet be calculated due to insufficient time since treatment discontinuation had been treated with novel direct-acting antiviral agents combinations. For that reason, we extrapolated the observed direct-acting antiviral agents SVR rate of 97% and assumed that 97% of these 80 individuals (n=77) will eventually be successfully treated. This resulted in an estimated number of 302–77=225 individuals who remain untreated or unsuccessfully treated. SVR, sustained virological response (ie, HCV cure).