Objectives To assess trends in the demography, survival and mortality for people with a positive HIV result over four eras of Highly Active Antiretroviral Treatment between 1981 and 2009, and to describe trends for death from AIDS defining and non AIDS defining causes.
Design Secondary data analysis using data linkage and multivariate survival analysis.
Methods Of 5873 case records for people with a positive diagnosis of HIV in Scotland from 1981 to 2009 recorded on the Health Protection Scotland HIV database, 1593 people were known to be deceased. Of these 1191 were linked successfully to cause of death data held by the General Register Office (Scotland) by various means including probabilistic matching. Kaplan-Meier survival time curves and Cox Proportional Hazards (adjusted for covariates) were calculated for four treatment eras. Proportions in broad cause of death groups were compared between eras.
Results While overall survival time from first report increased over the eras, survival time decreased for those dying with an AIDS defining condition. Hazards by era showed patterns in accordance. Mean age and age at first report increased. Among AIDS defining primary conditions the proportion of respiratory and neurological and eye reduced to zero, and the proportion of infections increased from 37% pre-1997 to 81% 2005–2009. Within non AIDS defining conditions there was no clear pattern of change.
Conclusions Late diagnosis implied a need for opportunistic HIV testing, targeted prevention, and better follow-up. Data issues needed to be addressed.
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