Well-being of haemophilia patients: a model for direct and indirect effects of medical parameters on the physical and psychosocial functioning

Abstract

Abstract-This study outlines the development and evaluation of a structural equation model for establishing the consequences of haemophilia. The hereditary disorder is characterized by a high tendency to haemorrhages, with recurrent bleeding mto the joints causing irreversible joint damage. The model is, in general, an attempt to answer the following questions: what is the effect of haemophilia on the wellbeing (i.e. satisfaction, health, somatic complaints and self-esteem) of patients and what is the additional or mediating role of other individual characteristics in this pathway? Disease severity, joint impairment and disability are defined äs antecedents of well-being and the mediating roles of appraisal (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 out to be the strengest determinants of well-being and partly mediated the detrimental effect of disability on well-being. The role of appraisal remained somewhat unclear, äs no significant relationship was established between this personal evaluation of haemophilia and well-being. Nevertheless, appraisal very well reflected the level of disability. An internal locus of control and favourable psychological characteristics appeared to reduce the perceived seriousness of haemophilia. No evidence was found for social Support to act äs a mediator between disability and well-being. The perception of support did show moderately strong associations with psychological characteristics (i.e. anxiety and depression) and satisfaction ratings. The study merits further research on quantifying the relationships between clinical parameters and psychosocial outcomes in patients with a chronic disease.

Quality of life and pain in Chinese lung cancer patients: Is optimism a moderator or mediator?

“…Optimists tend to have a faster rate of recovery from surgery nature? The effects of medical antecedents on subsequent QoL among optimists may be mediated by more positive appraisals of treatment related side-effects and the use of more positive coping strategies [4,[13][14][15]. However, unrealistic optimism can lead to greater coping difficulties arising from disappointment and probable failure to adequately prepare for likely outcomes [16].…”

“…Psychosocial variables including optimism partly mediated the effect of disability on global life satisfaction among 980 haemophiliacs [15], while in nasopharyngeal cancer patients, optimism mediates between eating ability and QoL [17]. However, in a cross-sectional study examining the mediating effects of psychosocial variables (including optimism) between disease severity in chronic obstructive pulmonary disease and QoL, optimism did not significantly predict nor mediate QoL [14].…”

Factors Associated With Subjective Well-Being In Adults With Hemophilia

“…Triemstra et al [26] reported that the effects of joint damage and concomitant disability, more common in patients with severe hemophilia, influence satisfaction with life, health and self-esteem. The anxiety and self-esteem were psychological characteristics with significant differences between the clinical categorization of hemophilia observed.…”

A qualitative exploration of the unique challenges facing older men with haemophilia and the implications for social work practice

“…However people with haemophilia in general may have problems with social participation due to time in hospital and physical inability to participate or attend events/functions (Triemstra et al, 1998); wanting to hide their condition due to discrimination and stigma (Barlow, Stapley, Ellard, & Gilchrist, 2007); or mental health barriers such as stress, high anxiety, low self-esteem, and depression (Ghanizadeh & Baligh-Jahromi, 2009). Considering that Bos (2007) found social support can buffer the ill-effects of illness and stress for older people with haemophilia, strategies are needed to help older people with haemophilia overcome barriers to social participation.…”