More than half (56%) of adult patients with hemophilia are adherent to a prescribed prophylaxis regimen, but compliance appears less likely among patients who are having difficulty coping with pain or have a high conviction of disease.
Ana Torres-Ortuño, PhD, of the University of Murcia (Spain) and her colleagues performed a multicenter, cross-sectional descriptive study of 23 adult patients with severe hemophilia A or hemophilia B using various validated questionnaires that measured quality of life, disease perception, coping strategies, and treatment adherence.
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The researchers found that Patients who experienced haemarthrosis with greater frequency had significantly greater adherence in terms of dosing (P less than .05), planning (P less than .05), and skipping (P less than .01). Similarly, patients with HIV infection were more adherent in terms of frequency of infusion than patients without infection.
The researchers also found significant correlations among all the psychosocial variables measured and adherence to prophylaxis. For instance, patients who had poorer quality of life related to managing their physical health, pain, and emotions showed poorer planning of their treatment. Patients who had difficulty remembering treatment had poorer quality of life related to pain and vitality, but they also had greater conviction of disease and hypochondriasis.
“Intervention programmes should be aimed more at changing barriers that patients and caregivers encounter when accepting diagnosis and how they can adapt their resources and skills to better take advantage of the progress made in treatments,” the researchers wrote.
The study was supported by a grant from Pfizer. The researchers reported having no financial disclosures.
SOURCE: Torres-Ortuño A et al. Vox Sang. 2018 May 24. doi: 10.1111/vox.12669.