European survey on pain management in patients with haemophilia

Background: Persons with haemophilia (PWH) may suffer acute, disabling pain from haemarthroses and chronic pain from arthropathy. Despite this, no evidence-based guidelines are available for pain management in these patients. Methods: The European Haemophilia Therapy Standardisation Board (EHTSB) under- took a survey of pain management in PWH. The survey, distributed to 20 European haemophilia treaters, aimed to investigate their general approach to pain assessment and therapy, knowledge of analgesic therapy and approaches to pain management through various clinical scenarios. Results: Participating centres followed up 1004 children (457 severe haemophilia, 84% on prophylaxis); 20% have haemophilic arthropathy and 8% have chronic pain. Centres followed up 2383 adults (944 severe haemophilia, 32% on prophylaxis); 60% have arthropathy, 35% chronic pain. Analgesic use is directed by the HTC in about 60% of cases, but in about 25% by patients themselves. The presence, intensity, duration, and frequency of pain and analgesic use are regularly assessed when reported by patients and at check-ups. Only a minority of centres use a defined scale for pain assessment or have management guidelines. Very few arrange regular consultations with a pain specialist. For acute pain, paracetamol is preferred first-line in children, whereas paracetamol or NSAIDs are used in adults. Children with chronic pain are treated with paracetamol or NSAIDs, while adults more often receive COX-2 inhibitors. There is little consensus for management of pain beyond first-line. Conclusions: This survey highlights the variability of clinical approach to pain management in haemophilia. There is need for evidence-based guidelines for a more systematic approach