Managing Haemophilic Arthropathy in People With Haemophilia in Japan: An Informal Consensus

ABSTRACT Introduction People with haemophilia who develop haemophilic arthropathy experience disabling physical effects, limiting functionality and quality of life (QOL). Although Clinical Practice Guidelines are available for haemophilia management, consensus on haemophilic arthropathy management is needed. Aim To develop recommendations for haemophilic arthropathy management in people with haemophilia adapted to the Japanese medical setting. Methods Using an informal consensus method, a steering group of 14 clinical experts (orthopaedic, rehabilitation, paediatric, and haematology) in Japan developed 40 literature‐based statements and 18 sub‐statements related to haemophilic arthropathy management in people with haemophilia. A panel of 30 experts was surveyed by email about their level of agreement with each statement/sub‐statement. Responses were tabulated to determine the level of agreement with each statement/sub‐statement: strong consensus, consensus, non‐consensus, and strong non‐consensus. Results The survey was completed by 27/30 respondents. Strong consensus/consensus was reached for 39 statements/sub‐statements, non‐consensus/strong non‐consensus was reached for four (all related to pain assessment and management), and consensus/non‐consensus was not reached for 15. Conclusion Based on insights from a wide range of clinical experts, recommendations for the management of haemophilic arthropathy in people with haemophilia in Japan were developed to aid in addressing the unique challenges faced by healthcare providers in the country. The survey findings indicate that diagnostic tools are needed to aid in haemophilic arthropathy diagnosis. Routine evaluations (physical function, joint ultrasound, QOL, and psychological), activities (physical therapy, rehabilitation, aerobic exercise, and sports), appropriate pain management, and proactive screening for osteoporosis are important when managing haemophilic arthropathy in people with haemophilia.