Monitoring pain and joint health in patients with haemophilia

Objective Patients with haemophilia experience joint bleeds and develop chronic joint disease and pain leading to reduced mobility. Patient reported outcome is crucial to optimize treatment. We developed a simple questionnaire to assess pain and joint health to investigate the current status of our patients and the possibility for treatment optimization.

Material and Methods All patients with haemophilia received the questionnaire during a personal visit at our haemophilia treatment center. The following items were asked: presence and location of pain and pain intensity in the last four weeks, triggering factors, physical activity and therapeutic interventions. The patient charts were evaluated for type and severity of haemophilia and treatment regimen.

Results 159 patients (pts) returned at least one questionnaire including 139 (87%) pts with haemophilia A (HA), 20 (13%) with haemophilia B (HB), 127 (80%) pts with severe haemophilia. The average age at the time of the first questionnaire was 38 years. 127 (80%) pts were treated with prophylaxis, 96 (60%) patients reported regular physical activity. Pain in the last four weeks before the visit date was stated by 119 (75%) pts. The ankle joint (n = 74, 47%), knee joint (n = 46, 29%), elbow joint (n = 40, 25%), followed by shoulder joint (n = 27, 17%) and hip joint (n = 14, 9%) were the reported joints with decreasing frequency. 30 (19%) pts reported pain in other parts of the body. As a trigger for pain 93 (58%) pts mentioned extended physical activity and 44 (28%) pts a bleed. 57 (36%) pts reported pain at rest and 26 (16%) pts reported constant pain. The mean severity of pain on the numeric analog scale (NAS) was 3.26. For the treatment of joint pain 86 (54%) pts used factor replacement, 93 (58%) pts pain medication and 62 (39%) pts used conservative measures like immobilization and cooling. 40 (25%) pts performed physiotherapy regularly and 10 (6%) pts were treated by pain specialist. 104 (65%) pts reported that the used treatment was successful.

Conclusion In addition to the medical visit the questionnaire detected relevant information about pain and joint health in pts with haemophilia. Despite significant improvements in the treatment of haemophilia and 80% of pts on prophylaxis pain and joint health are of major importance and need further treatment optimization. Standardized patient reported outcome might add relevant input for this challenge.

Publication History

Article published online:
18 June 2021