Mortality among people with HIV in the UK in 2021: findings from the National HIV Mortality Review

ABSTRACT

Background: The National HIV Mortality Review (NHMR) was launched by UK Health Security Agency (UKHSA) and British HIV Association to better recognise causes of death and preventable death, and to describe end-of-life care, among people with HIV. Method(s) UK HIV services submitted data on all known deaths among people with HIV under their care in 2021 through a secure online form. Cause of death was categorised by an epidemiologist and four clinicians using the Coding Causes of Death in HIV protocol. Result(s) In 2021, 101 services reported 606 deaths among people with HIV to NHMR. In 2019, 74 services reported to the NHMR while 121 reported in 2020. Median age at death was 58 [interquartile range (IQR) 56-59] and most (76%) were male. Death cause was ascertainable for 78% (n=475), with the most common being non-AIDS-related cancers (26%), followed by non-AIDS-defining infections (19%), cardiovascular disease (16%), AIDS (9%), substance misuse (8%), respiratory disease (4%), accident/suicide (3%), liver disease (2%) and other causes (11%). COVID- 19 caused or contributed to 11% of all deaths. Thirtythree people (5%) died within a year of HIV diagnosis, 90% of these were diagnosed late (CD4<350 cells/mm3), 80% very late (CD4<200 cells/mm3), 54% diagnosed with AIDS and 33% had documented missed opportunities for earlier diagnosis. Viral suppression (<200 copies/mL) (87%) and treatment coverage (98%) was high with the median time on treatment 13 years [IQR 8-20]. Common lifestyle risk factors in the preceding year included smoking (33%;n=179), excessive alcohol use (20%;n=103). Other factors included drug use (non-injecting and injecting) and opioid substitution therapy. Death had been expected for 298 (49%) individuals, of whom 230 had discussed end-of-life care and 108 had a documented advanced end-of-life care plan in place. Conclusion(s) Over half of people living with diagnosed HIV are aged over 50. Most deaths were not AIDS related however, one in eleven people with diagnosed HIV in the UK died from AIDS. Of people that died within a year of diagnosis, one in three had documented missed opportunities for earlier HIV diagnosis.