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

Abstract

Abstract 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.

Keywords

• HIV
• Hemophilia
• Well-being
• Stigma
• Social conditions
• Employment