WELL-BEING OF HEMOPHILIA PATIENTS - A MODEL FOR DIRECT AND INDIRECT EFFECTS OF MEDICAL PARAMETERS ON THE PHYSICAL AND PSYCHOSOCIAL FUNCTIONING

This study outlines the development and evaluation of a structural equ ation model for establishing the consequences of haemophilia. The here ditary disorder is characterized by a high tendency to haemorrhages, w ith recurrent bleeding into the joints causing irreversible joint dama ge. The model is, in general, an attempt to answer the following quest ions: what is the effect of haemophilia on the wellbeing (i.e. satisfa ction, health, somatic complaints and self-esteem) of patients and wha t is the additional or mediating role of other individual characterist ics in this pathway? Disease severity, joint impairment and disability are defined as antecedents of well-being and the mediating roles of a ppraisal (i.e. the personal evaluation of the disease), health beliefs (i.e. locus of control), psychological characteristics (i.e. anxiety, anger, depression and optimism) and social support are investigated. Psychological variables turned our to be the strongest determinants of well-being and partly mediated the detrimental effect of disability o n well-being. The role of appraisal remained somewhat unclear, as no s ignificant relationship was established between this personal evaluati on of haemophilia and well-being. Nevertheless, appraisal very well re flected the level of disability. An internal locus of control and favo urable psychological characteristics appeared to reduce the perceived seriousness of haemophilia. No evidence was found for social support t o act as a mediator between disability and well-being.The perception o f support did show moderately strong associations with psychological c haracteristics (i.e. anxiety and depression) and satisfaction ratings. The study merits further research on quantifying the relationships be tween clinical parameters and psychosocial outcomes in patients with a chronic disease. (C) 1998 Elsevier Science Ltd. All rights reserved.