Comparison of the quality of life between HIV-positive haemophilia patients and HIV-negative haemophilia patients.

In a prospective study, we tested the hypothesis that an already reduced quality of life in haemophilia patients is further diminished in those haemophilia patients who contracted the human immunodeficiency virus (HIV) as a result of transfusion of coagulation factor preparations. From an available pool of 92 males with haemophilia A or B, 18 patients seropositive for HIV infection and 11 seronegative patients were randomly selected for the study. We applied two instruments to measure the quality of life (QOL) in our patients. The first instrument was the quality of well-being (QWB) scale that unifies QOL into a single score based upon an assessment of the patient's symptoms and health-related reductions in mobility, physical activity and social activity. The second instrument was SF-36, the questionnaire from the Medical Outcome Study (MOS) that measures six dimensions of health status (physical functioning, role functioning, social functioning, pain, mental health and health perception). Measurements were obtained with both instruments at three interviews with each patient over a 1-year interval. As expected, HIV disease reduces QOL in haemophiliacs. The number of bleeding episodes within 2 months of interview was increased in the HIV-positive cohort but not within 6 days of interview, indicating that HIV disease independently affects QOL in haemophilia patients. In a typical 30-year-old patient, haemophilia itself has reduced quality of their lives by 9.3 years, and HIV disease additionally from 8.5 to 20 years. On the MOS scales, the two patient groups differed significantly only in the dimensions of health perception and pain magnitude. Although HIV disease led to a decrement in QOL of haemophilia patients, it also appears that haemophilia patients are able to develop coping skills to prevent more drastic effects of HIV disease on their QOL. Future studies will need to explore the nature and mechanisms of this 'buffering' effect. 1996 Blackwell Science Ltd.