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

• Published in: BMC public health Vol. 19; no. 1; p. 1714
• Main Authors: Ingvorsen, Emilie B, Schnohr, Christina, Andersen, Terkel, Lehrmann, Lars, Funding, Eva, Poulsen, Lone H, Holm, Karen B, Laursen, Alex L, Gerstoft, Jan, Bjorner, Jakob B
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 19-12-2019; BioMed Central; BMC
• Subjects: Adolescent; Adult; Age; Aged; Aged, 80 and over; Analysis; Blood products; Child; Child, Preschool; Correlation analysis; Denmark - epidemiology; Disease; Employment; Female; Health aspects; Hemophilia; Hemophilia A - epidemiology; Hemophilia A - psychology; Hemophilia A - therapy; Hepatitis; HIV; HIV infections; HIV Infections - epidemiology; HIV Infections - psychology; HIV patients; HIV tests; Human immunodeficiency virus; Humans; Infant; Infant, Newborn; Infection; Infections; Longitudinal studies; Male; Medical research; Mental Health - statistics & numerical data; Middle Aged; Mortality; Patients; Polls & surveys; Psychological aspects; Public health; Quality of life; Questionnaires; Regression analysis; Response rates; Scandals; Signs and symptoms; Social aspects; Social Behavior; Social conditions; Social Stigma; Society; Stigma; Studies; Surveys; Surveys and Questionnaires; Trends; Variables; Well-being; Young Adult; Denmark; Well-being; HIV; Employment; Stigma; Social conditions; Hemophilia
• ISSN: 1471-2458; 1471-2458
• DOI: 10.1186/s12889-019-8062-9

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.
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.
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.
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.