People with hemophilia in Nordic countries experience high rates of pain, depression, and anxiety, according to a new study published in Haemophilia. The authors noted that symptoms increased with disease severity and could have negative effects on patients’ quality of life.
“Of the [people with hemophilia] survey respondents, around 50% reported experiencing pain in the last 6 months, the majority of whom had pain at least once a week,” the authors wrote. “Nevertheless, over 60% of [people with hemophilia] were satisfied with the management of their pain overall and results were similar in the caregiver survey.
“There may be an unmet need in the management of hemophilia-related pain among people with mild hemophilia since a higher proportion of people with mild (compared with moderate or severe) hemophilia who had experienced pain reported that they felt a need for treatment.”
The research team administered a survey about pain, depression, and anxiety related to hemophilia along with the standard EuroQoL-5-Dimension quality of life survey to 996 people with hemophilia, 343 of whom responded. They also surveyed 236 caregivers of children with hemophilia, 71 of whom responded, and 5 researchers in hemophilia treatment centers (HTCs) in Sweden, Finland, and Denmark.
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The results indicate that people with hemophilia generally feel that their hemophilia pain is managed well, but among those who experience pain, there is a higher incidence of depression and anxiety. About one-third of patients felt their anxiety or depression was not as well managed as their pain, and HTCs reported that anxiety and depression lead to poorer adherence to hemophilia treatment.
The authors suggest that there is a need for more proactive guidelines regarding the detection and management of depression and anxiety in people with hemophilia.
Steen Carlsson K, Binding B, Astermark J, et al. Pain, depression and anxiety in people with haemophilia from three Nordic countries: cross‐sectional survey data from the MIND study. Haemophilia. Published online April 23, 2022. doi:10.1111/hae.14571