Assessment of patients with late diagnosis and missed opportunities in the Swedish HIV-1 epidemic

Abstract

Discovered in 1983, with a possibility to diagnose since 1985, and with efficient treatment existing now for two decades, HIV-1 still ranks among the top ten causes of death globally. Approximately 40 million people are living with HIV-1 worldwide; almost half still not diagnosed. In Europe one third are estimated to be unaware of their infection and half are diagnosed late, with consequences in terms of increased morbidity, mortality, risk of onward transmissions and higher health care costs. The aim of this thesis was to assess the extent of late diagnosis of HIV-1 infection in Sweden and to analyse whom gets diagnosed late and why.

For Paper I we conducted a retrospective study of all patients diagnosed with AIDS (n=487), reported to the Swedish Centre of Infectious Disease Control (SMI) 1996-2002, concluding that the patients diagnosed late (here defined as simultaneous HIV/AIDS) represented an increasing proportion of patients with AIDS in Sweden. Migrants, persons infected heterosexually and persons aged over 40; all had a higher probability of a late diagnosis.

For Paper II we conducted a cross-sectional national cohort-study including all newly HIV-1 diagnosed patients at 12 Swedish clinics. Data were collected from the National quality register InfCare HIV (n=575) and additional questionnaires (n=409) from the clinics. 58% were Late Presenters (LP), presenting for care with CD4+ T-cells < 350/mm3 +/- AIDS. Age (with increasing odds by increasing age) or being a migrant had a distinct association with being a LP. Half of the migrants had lived in Sweden for > 1 year at diagnosis and two thirds had a missed opportunity at immigration. However, if born abroad, but reported to be infected in Sweden, there was no difference in LP compared to the Swedish born. One quarter of all patients had missed opportunities within Swedish healthcare, presenting with HIV- and/or AIDS-associated symptoms, without an offer of HIV-testing. 16% had a history of selfneglected symptoms.

In Paper III we further analysed the missed presentations at seeking healthcare, the HIV- and AIDS- associated symptoms neglected by the patients and also assessed the initiator of the HIV-test. Migrants were less likely both to neglect their symptoms and to be missed at health care compared to individuals born in Sweden. Also men who have sex with men (MSM) were less likely to neglect their symptoms compared to those with a heterosexually acquired infection. Patients with a history of drug use, a previous negative test (mainly MSM) and those infected abroad were more likely to take the initiative to test, whereas the opposite held for patients >50 years and those previously missed at presentation.

The predominance of migrants in Papers II-III, and results indicating that the number of domestic infections might be underestimated in this group, made us want to investigate this further. In Paper IV we applied a CD4+ T-cell decline trajectory model to a subsample of the Swedish migrant cohort (n= 1244) to compare estimates of country of HIV acquisition with the clinical reports. The model estimated that 17% had acquired the HIV infection after immigration, whereas the doctor’s estimate was 11%. Phylogenetic analysis was performed in discordant patients to explore whether this would favour the model or the doctor’s estimate. A higher concordance was found with the CD4 model estimates than with the clinical reports (30% vs. 17%).

In summary my thesis shows a high proportion of late HIV-1 diagnosis in Sweden, but also emphasizes that there are several opportunities to improve this. Activities to increase societal awareness, continuous promotion and normalization of the HIV-test, education of health care professionals including further implementation of indicator-guided testing and an extended testing and primary prevention aimed at migrants are all important steps forward