Background: Patients with chronic diseases have increased levels of health-related (HR) anxiety, depression and stress, negatively affecting quality of life (QoL). In hemophilia, improvements in QoL have been associated with prophylaxis and access to safe factor concentrates. Literature discussing specific aspects of the psychosocial burden of hemophilia is lacking.
1) Assess prevalence of HR depression, anxiety and stress
2) Evaluate health-related quality of life (HRQoL)
Methods: 61 participants (>18 years) with hemophilia A or B completed the SF-36v2, HEM-QoL-A, DASS & DSM-5 cross cutting measures (designed to differentiate between HR depression, stress, anxiety and related symptoms). Results were analyzed using T-test/chi-square test as appropriate and grouped by disease severity. Informed consent was obtained. The study was approved by the University of Calgary Research Ethics Board.
Results: Most respondents reported greater than average amounts of HR stress (84.4%, 49/58), anxiety (77.6% 45/58), and depression (75.9%, 44/58) secondary to their disease. 64% (39/61) of participants reported disturbed sleep and increased anger concerning their disease. Somatic symptoms, related to outside perceptions of their illness, were reported by 65.6% (40/61) of participants (Figure 1). Most participants reported lower functioning across all SF-36v2 domains, however, only pain (p=< 0.001) and general health (p=0.008) were significantly lower than Canadian normative data. Participants with severe hemophilia had significantly more pain (SF-36v2; t(1)=3.9; p=0.048), and reported more HR stress, anger and somatic symptoms than those with non-severe disease (Figure 2).
Conclusions: This study demonstrates that hemophilia negatively influences specific aspects of HRQoL for all patients, irrespective of severity. Participants reported significantly more pain and poorer overall wellbeing than the general population. The majority of respondents in this cohort reported increased anger and somatic symptoms; the relationship between these domains and hemophilia are unclear and require further study. Understanding the components of HRQoL is necessary for provision of holistic, multidisciplinary hemophilia care.
To cite this abstract in AMA style:Hews-Girard J, Goodyear MD. Psychosocial Burden of Hemophilia in a Canadian Cohort [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/psychosocial-burden-of-hemophilia-in-a-canadian-cohort/. Accessed January 27, 2022.
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