“Development in well-being and social function among Danish hemophilia patients with HIV: a three-wave panel study spanning 24 years”

Background Between 1975 and 1985 a total of 91 Danish patients with moderate and severe hemophilia (PWH) was infected with HIV constituting a major scandal in the Danish health care system. This study describes the burden of HIV infection among Danish PWH by evaluating changes from 1988 to 2012 in well-being, social function, experiencing stigma and openness about disease among Danish HIV + PWH. Methods Three anonymous surveys were conducted in 1988, 2001 and 2012 targeting all Danish patients with moderate to severe hemophilia. Survey responses were received from 53, 21 and 18 HIV + PWH respectively. A matched comparison sample of HIV − PWH was identified for each survey-year, using propensity score matching. Differences for each survey-year and trends over time were analyzed using ordinal logistic regression. Results In 1988, HIV + PWH had more psychosomatic symptoms than HIV − PWH, but in 2001 life satisfaction was higher among HIV + PWH than among HIV − PWH. Tests of differences in trend over time showed larger improvements in life satisfaction among HIV + PWH than HIV − PWH, while HIV − PWH showed an increase in educational level compared to HIV + PWH. Analysis restricted to HIV + PWH showed an increase in perceived stigmatization. Conclusions Differences between Danish HIV + and HIV − PWH regarding well-being and psychosomatic symptoms seem to have evened out between 1988 and 2012. However, results suggest that HIV + PWH still experience stigmatization and lower levels of education.