COMPARISON OF THE QUALITY-OF-LIFE BETWEEN HIV-POSITIVE HEMOPHILIA PATIENTS AND HIV-NEGATIVE HEMOPHILIA PATIENTS

In a prospective study, we tested the hypothesis that an already reduc ed quality of life in haemophilia patients is further diminished in th ose haemophilia patients who contracted the human immunodeficiency vir us (HIV) as a result of transfusion of coagulation factor preparations . From an available pool of 92 males with haemophilia A or B, 18 patie nts seropositive for HIV infection and 11 seronegative patients were r andomly selected for the study. We applied two instruments to measure the quality of life (QOL) in our patients. The first instrument was th e quality of well-being (QWB) scale that unifies QOL into a single sco re based upon an assessment of the patient's symptoms and health-relat ed reductions in mobility, physical activity and social activity. The second instrument was SF-36, the questionnaire from the Medical Outcom e 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 instrume nts at three interviews with each patient over a 1-year interval. As e xpected, HIV disease reduces QOL in haemophiliacs. The number of bleed ing episodes within 2 months of interview was increased in the HIV-pos itive cohort but nor within 6 days of interview, indicating that HIV d isease 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 H IV 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 stud ies will need to explore the nature and mechanisms of this 'buffering' effect.