Gaining insight into the complexity of pain in patients with hemophilia: a longitudinal study from a biopsychosocial perspective.

Hemophilia is a genetic disorder characterized by recurrent bleedings in synovial joints. Thanks to tremendous scientific progress, patients with hemophilia (PwH) have a life expectancy that is comparable to the general population. However, the majority of adult PwH suffer from extremely intense and invalidating joint pain. Although the complexity of joint pain has been studied in other chronic joint pain conditions, there is an immense lack of studies examining pain in PwH. Current studies have not sufficiently focused on pain as primary outcome and thus lack valid and thorough assessments of prevalence and extent of pain, life impact and nociceptive processing. Moreover, pain is not yet studied within a biopsychosocial perspective and the role of beliefs, emotions and behavior is thus unexplored. Especially interactions between pain and beliefs, emotions and behavior are wasteland, since longitudinal studies are necessary to explore the bidirectional relations. Therefore the main aim of the current proposal is to gain more insights in joint pain in PwH enabling us to move towards an adequate pain management within this patient population. As the majority of studies in other chronic joint pain conditions has shown that the biopsychosocial perspective is crucial in pain management, we will use a consensus-based set of outcome measures that should be evaluated in patients with chronic joint pain. The primary objective is to examine pain characteristics (prevalence, intensity and extent) and life impact of pain (impact on physical functioning and quality of life) using validated outcome measures in an unselected and representative sample of adult PwH. As secondary objective we want to assess peripheral and central nociceptive processing in PwH, and examine the relationship with joint status to gain more insight in the pathophysiology of joint pain in PwH. The third objective is to record fluctuations and interrelations in pain intensity, intake of medication and physical activity to gain more insight in the relation between pain intensity and pain behavior in PwH. We will examine whether beliefs and emotions are predictive of pain behavior. The insights gathered with the current research proposal will lead to more comprehensive biopsychosocial pain assessments of PwH both in further research and in clinical practice. These ameliorated assessments unravelling contributors to chronic pain in this populations, will serve as base to steer interventions for the management of joint pain, accounting for nociceptive processing profiles and specific beliefs, emotions and behavior. We expect that proper pain management strategies will be more effective and less costly, resulting in enhanced quality of life and increased social participation for PwH.

Keywords:HEMOPHILIA, CHRONIC PAIN, NEUROPHYSIOLOGY

Disciplines:Pain medicine anaesthesiology, Hematology, Neurophysiology