Understanding factors behind the late testing and diagnosis of HIV: Findings from phase 1 of the IMPRESS Health 2 (Interreg IVA Channel Programme) Project

Over 100,000 have HIV in the UK. However, while effective treatment exists, there is neither a cure nor a preventive vaccine, so 500+ people die from AIDS every year with many others dying undiagnosed. Health policy focuses on prevention and support, but it is necessary to increase the number of early diagnoses and reduce the rate of spread (Public Health England, 2014). Approximately 25% of HIV positive individuals do not know their status however, and almost half of all UK diagnoses occur late. It is vital therefore, to understand and address barriers to early testing and diagnoses to address this trend.

Clinical data for 240 patients diagnosed with HIV in 3 trusts in Kent and Medway over 5 years were analysed in relation to clinical, social, demographic and psychosexual factors likely to affect knowledge of HIV and their decision to seek a test. Fifty-three semi-structured interviews were also conducted with patients and healthcare professionals to elicit experienced and perceptions about barriers to testing and ways to increase uptake.

Patients were aged 19-81 (mean 40 years) and 67.5% were men. Women were more likely to be diagnosed late however (67.9% versus 56.8%), and late diagnosis was higher than the national average for both sexes (60.4%) with the highest rates in Medway (66.1%) and Maidstone and Tunbridge Wells (64.6%). Patients diagnosed late were 4 years older than those diagnosed early, and late diagnosis was higher in ethnic minority groups (70.2%) compared to white British (53.0%). Those born outside the UK were also generally diagnosed later (69.8%). The most frequent categories affected were heterosexuals (56.2%), men who have sex with men (36.6%) and intravenous drug users (2.0%). Patients diagnosed during an acute hospital admission were far more likely to be diagnosed late (89.1%) compared to other settings (49.6% - 57.1%). Qualitative data suggested that outmoded notions of HIV as a ‘gay’ disease still prevailed and heterosexuals did not generally consider themselves to be at risk. Healthcare professionals sometimes failed to acknowledge risks in ‘non-traditional’ groups and often overlooked HIV as a likely cause of symptoms until they were seriously unwell.

Clearer public health messages should be targeted at the general population and there is a need to better educate healthcare professionals, especially GPs about the clinical indicators of HIV which also needs to be de-stigmatised.