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

Abstract

Purpose: The 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.

Participants: InfCareHIV 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 date: Sweden 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 plans: InfCareHIV 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.

Keywords: Epidemiology; HIV & AIDS; PREVENTIVE MEDICINE.

Figure 1

Year of HIV diagnosis. People with diagnosis <1983 were diagnosed retrospectively on biobanked blood once HIV-testing was introduced.

Figure 2

Clinical decision support system with results from self-reported health questionnaire below the graph. Red symbolises low ratings that need attention (very unsatisfied/unsatisfied), yellow medium ratings (rather unsatisfied/rather satisfied) and green contentment (satisfied/very satisfied), online supplemental table 3. Antal missade doser, missed doses of antiretroviral therapy; Biverkningar, side effects; Delaktig i planering, patient participation in planning of care; Kroppslig hälsa, physical health; Psykiskt välmående, psychological health; Rökning, smoking; Sexualitet, sexual health.