Background: Since 2013, the London Mortality Study Group has conducted annual reviews of deaths among people with HIV to reduce avoidable mortality and improve the quality of patient care.
Methods: All London trusts commissioned by NHS England to provide HIV care reported 2016 data on patients who died. Data were submitted using a modified Causes of Death in HIV (CoDe) reporting form. Cause of death was categorised by a pathologist and two clinicians.
Results: There were 206 deaths reported across 20 trusts; 77% of these were among men and the median age at death was 56 years. At the time of death, 81% (134/165) of people were on ART, 61% (113/185) had a CD4< 350 cells/mm³ and 24% (47/192) a VL ≥200 copies/ml. Cause was established for 80% (164) of deaths. Non-AIDS malignancies were the most common cause of death followed by AIDS-defining illnesses. Where reported (n=181), risk factors in the year before death included: smoking (37%), excessive alcohol consumption (19%), non-injecting drug use (IDU) (20%), IDU (7%) and opioid substitution therapy (6%). Co-morbidities were common (n=200): 39% had a history of depression, 33% chronic hypertension, 27% dyslipidemia, 18% HBV/HCV co-infection and 14% diabetes. Almost half of deaths were reported as sudden (44%; 79/177) and 36% (64/178) as unexpected; 60% (63/104) of expected deaths were in hospital. Two thirds of expected deaths (48/72) had a prior end-of-life care discussion, though this information was only available for 57%.
Conclusions: In 2016, 77% of deaths were due to non-AIDS conditions and the majority of patients were on ART and virally suppressed. However, a number of preventable deaths were identified. Underlying risk factors, such as smoking and substance misuse were common. Findings also show improvements are necessary in end-of-life care planning and in collaborative decision making with patients and other specialties, such as oncology and cardiology.

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