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

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.
Competing Interests: Competing interests: CC has received lecture, moderator and advisory board fees from GSK/ViiV, Gilead Sciences and MSD and an unrestricted Nordic Fellowship Grant from Gilead Sciences Nordic. JB has received lecture and advisory board fees from GSK/ViiV and Gilead. FM has received lecture and advisory board fees from GSK/ViiV, AstraZeneca and Gilead Sciences. OE has received a grant to his institution from Pfizer and honoraria as speaker from Gilead Sciences. HN has received advisory board fees from Gilead and AbbVie. AM has received lecture and advisory board fees from GSK/ViiV, Gilead Sciences and Pfizer. MG has received research grants from Gilead Sciences and Janssen-Cilag and honoraria as speaker, DSMB committee member and/or scientific advisor from Amgen, AstraZeneca Biogen, Bristol-Myers Squibb, Gilead Sciences, GlaxoSmithKline/ViiV, Janssen-Cilag, MSD, Novocure, Novo Nordic, Pfizer and Sanofi. AS has received research grants from Gilead Sciences and honoraria as speaker, DSMB committee member and/or scientific advisor from AstraZeneca, Bristol-Myers Squibb, Gilead Sciences, GlaxoSmithKline/ViiV and MSD. All other authors declare no competing interests.
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