Paul McLaughlin, clinical specialist physiotherapist in hemophilia at the Katharine Dormandy Haemophilia Centre of the Royal Free Hospital in London, U.K., started off the plenary session by introducing the main speaker Nathalie Roussel, Assistant Professor at the Faculty of Medicine and Health Science, University of Antwerp, Belgium. Roussel first talked about the prevalence of chronic pain in patients with hemophilia. Clinical studies have shown that 35% of people with hemophilia experience pain in five or more sites across the body. “This may indicate that something unusual is happening,” said Roussel, “as pain may be occurring in unexpected sites and not only in the affected joints.”
The assessment of pain in hemophilia is not well established and there is no consensus in pain management across 22 European hemophilia treatment centres surveyed. “To achieve consensus, there needs to be a better understanding of the pathophysiology of pain in hemophilia,” said Roussel.
Pain is due to tissue damage and also the perception of tissue damage; therefore, it can be both a sensory and an emotional experience. The physical effects of pain on muscles, movement, and activities of daily living can lead to a reduction in quality of life and feelings of frustration and helplessness.
The traditional view in hemophilia is that acute pain is linked to bleeding and chronic pain is linked to arthropathy. But studies have shown that patients and healthcare providers have difficulty distinguishing between acute and chronic pain, or between pain from bleeding and pain originating from a flare. “Pain is not reliable for diagnosis of bleeding or arthropathy and better diagnostic tools are needed,” said Roussel.
Roussel described the fundamentals of normal pain physiology and pain pathophysiology. “It is a mistake to link pain to damage,” she said. “A patient can still feel pain even if there is no damage upon imaging.” Roussel then elaborated on the concept of abnormal pain physiology, in particular pain hypersensitivity, and how it relates to hemophilia. People with hemophilia experience pain in expected sites (for example, joints), and also throughout the body, which suggests widespread pain hypersensitivity. In addition, people with hemophilia do not experience exercise-induced hypoalgesia, a phenomenon whereby exercise increases the pain threshold. This has led Roussel to question whether there are altered pain mechanisms in people with hemophilia, and whether these alterations are due to some type of cognitive-emotional sensitization.
Efforts have been made to examine pain coping and pain catastrophizing in people with hemophilia and most published reviews recognize the importance of assessing psychosocial dimensions contributing to pain or acting as a barrier to its effective management. However, there is a lack of studies assessing the effect of stress, negative emotions, and catastrophizing on pain sensitivity. Prospective pain investigations in different hemophilia types are also lacking.
Roussel stressed the importance of listening to the pain beliefs of people with hemophilia. She identified several tools, aside from the visual analogue scale, that are useful for assessing pain in hemophilia. Roussel also emphasized the need for appropriate treatment plans with targeted medication tailored to specific pain types, and consistency in the messages conveyed to people with hemophilia.