Distress in patients with bleeding disorders: a single institutional cross‐sectional study

Abstract

Distress among patients with congenital bleeding disorders followed at a comprehensive HTC was high and similar to that reported among patients with cancer. Future research should determine whether distress impacts clinical outcomes in patients with bleeding disorders as demonstrated in other chronic disorders.

Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults

“…In this study, the association between professional status and both anxiety and depression remained significant even after controlling for clinical variables (disease severity and number of affected joints), showing that unoccupied patients (unemployed, retired or on medical leave) present higher symptomatology. These findings add to previous conclusions regarding PWH, providing a research direction on the impact of haemophilia on emotional well‐being and underscoring the relevance of a biopsychosocial model of haemophilia care that also considers professional status as a potential risk factor for poor mental health. Although further research is warranted, it can be suggested that PWH would benefit from more flexible employment policies.…”

“…Pain is a central issue in haemophilia care, either due to haemarthrosis or to chronic arthropathy, which has been associated with higher emotional distress . Congruently in this study, participants with significant anxiety/depression symptoms were more likely to report higher pain frequency, with heightened intensity and interference.…”

“…This is particularly relevant considering that medical treatments alone may not be sufficient to address some of the challenges faced by PWH . Moreover, high levels of distress have a detrimental impact on adherence to factor replacement therapy and disease management, potentially affecting haemophilia‐related health outcomes . Given these associations, and regardless of whether emotional distress is a cause or a consequence of disease and treatment issues, a promising strategy for improving haemophilia outcomes would therefore be the effective management of emotional distress experienced by patients.…”

“…Given these associations, and regardless of whether emotional distress is a cause or a consequence of disease and treatment issues, a promising strategy for improving haemophilia outcomes would therefore be the effective management of emotional distress experienced by patients. A thorough psychosocial assessment, including an appropriate anxiety and depression screening, is therefore warranted in haemophilia care, towards a more systemic approach and integrated care . Nevertheless, the screening of anxiety and depression in PWH has been either undifferentiated and overlapped or based on relatively unspecific evaluation of symptoms.…”

Disease‐related distress among adults with haemophilia: A qualitative study

“…24 A person with haemophilia may experience sporadic or persistent distress related to their disease which may impact their ability to cope with and manage health. 24 A person with haemophilia may experience sporadic or persistent distress related to their disease which may impact their ability to cope with and manage health.…”