Cohort profile: InfCareHIV, a prospective registry-based cohort study of people with diagnosed HIV in Sweden

Abstract

PurposeThe Swedish InfCareHIV cohort was established in 2003 to ensure equal and effective care of people living with HIV (PLHIV) and enable long-term follow-up. InfCareHIV functions equally as a decision support system as a quality registry, ensuring up-to-date data reported in real time.ParticipantsInfCareHIV includes data on >99% of all people with diagnosed HIV in Sweden and up to now 13 029 have been included in the cohort. InfCareHIV includes data on HIV-related biomarkers and antiretroviral therapies (ART) and also on demographics, patient-reported outcome measures and patient-reported experience measures.Findings to dateSweden was in 2015 the first country to reach the UNAIDS (United Nations Programme on HIV/AIDS)/WHO’s 90-90-90 goals. Late diagnosis of HIV infection was identified as a key problem in the Swedish HIV-epidemic, and low-level HIV viraemia while on ART associated with all-cause mortality. Increased HIV RNA load in the cerebrospinal fluid (CSF) despite suppression of the plasma viral load was found in 5% of PLHIV, a phenomenon referred to as ‘CSF viral escape’. Dolutegravir-based treatment in PLHIV with pre-existing nucleoside reverse transcriptase inhibitor-mutations was non-inferior to protease inhibitor-based regimens. An increase of transmitted drug resistance was observed in the InfCareHIV cohort. Lower efficacy for protease inhibitors was not due to lower adherence to treatment. Incidence of type 2 diabetes and insulin resistance was high in the ageing HIV population. Despite ART, the risk of infection-related cancer as well as lung cancer was increased in PLHIV compared with HIV-negative. PLHIV were less likely successfully treated for cervical precancer and more likely to have human papillomavirus types not included in current HPV vaccines. Self-reported sexual satisfaction in PLHIV is improving and is higher in women than men.Future plansInfCareHIV provides a unique base to study and further improve long-term treatment outcomes, comorbidity management and health-related quality of life in people with HIV in Sweden.

Cohort Profile: A European Multidisciplinary Network for the Fight against HIV Drug Resistance (EuResist Network)

“…EuResist Network is a non-profit European Economic Interest Grouping (EEIG) composed by: Karolinska Institutet (Stockholm, Sweden) [ 39 ]; Max Planck Gesellschaft (Germany); University of Siena (Italy); InformaPRO s.r.l. (Rome, Italy); Cologne University (Germany).…”

Extracutaneous Kaposi sarcoma risk remains higher in people with HIV in the post-ART era: a nation-wide population-based study

“…Despite higher HHV-8 seroprevalence in migrants from SSA living in nonendemic regions [18], the broad availability of ART may have reduced the interethnic differences in Sweden. More migrants with HIV are on suppressive ART already at time of immigration to Sweden compared to in the past [5]. In contrast, recent studies in the U.S. report persistently increased KS risk, slower incidence declines and higher mortality rates in non-Hispanic Black PWH compared to other ethnicities [19,20].…”

“…InfCareHIV was established 2003 and includes data from all HIV clinics in Sweden and thus more than 99% of people diagnosed with HIV in Sweden [5]. Data on PWH diagnosed before 2003 has been supplemented retrospectively [5].…”

“…InfCareHIV was established 2003 and includes data from all HIV clinics in Sweden and thus more than 99% of people diagnosed with HIV in Sweden [5]. Data on PWH diagnosed before 2003 has been supplemented retrospectively [5]. Patients are invited to be enrolled at the time of HIV diagnosis, with laboratory and therapeutic data updated at every 6-month follow-up at a minimum.…”

“…In resource-rich settings, the increased risk is mainly caused by late HIV diagnosis and subsequent late initiation of ART [3]. Late diagnosis is a remaining problem in Sweden and in Europe [4,5], and increases the risk of severe disease, worse outcomes and death [6].…”