Unrecognised HIV related deaths.

OBJECTIVES: To establish whether follow up of deaths from selected HIV related causes could increase the number of cases of HIV infection reported to the Public Health Laboratory Service Communicable Disease Surveillance Centre (CDSC), and to estimate the proportion of deaths among HIV positive men that occurred in men who were not known to be HIV positive at the time of death by the person who signed the death certificate. DESIGN: Follow up of draft death entries received by the Office of Population Censuses and Surveys on which one of 11 medical or external causes likely to be related to HIV was stated; letters were sent to the people who signed the certificates. The respondents were invited to report men known to have been HIV positive who were not already on the CDSC register. SETTING: England and Wales. SUBJECTS: Men aged 15-54 who died in February 1989 to July 1989 with one of the 11 selected HIV related diseases as cause of death on their death certificates. MAIN OUTCOME MEASURES: Number of men reported to the CDSC as a result of this follow up; estimate of excess deaths due to an HIV related cause; estimate of the proportion of excess deaths that occurred in those who were not known to be HIV positive at the time of death. RESULTS: Replies were received for 473 deaths (86%). Forty were for men known to have been HIV positive, 31 of whom had been reported to CDSC by the time they died; six were subsequently reported. The respondent did not know that the decreased was HIV positive for 20 (35%) of the 57 excess deaths in men for whom one of the medical causes was stated and 41 (93%) of the 44 excess deaths in men for whom one of the external causes was stated. CONCLUSION: Follow up of death registrations is not an efficient way of increasing the number of cases of HIV infection reported to CDSC. Between 35% and 60% of HIV positive people for whom certain causes are stated may be dying without HIV positivity having been diagnosed. There may be implications for those caring for people with these conditions and those who carry out postmortem examinations.