Haemophilia and Osteoporosis Management in Germany

Objectives: Haemophilia associated symptoms like bleeding and arthropathy seem to increase the risk of osteoporosis in patients. Additional risk factors like lifestyle and co-morbidities may contribute to the development of osteoporosis. The status of osteoporosis management in patients with haemophilia A in German haemophilia centres was subject of this investigation.

Methods: A questionnaire was developed and sent to 50 haemophilia centres in 2017. Questions concerned awareness, examination and screening patterns of osteoporosis.

Results: In total, 15 centres participated, of which more than two thirds took care of more than 40 patients. One third of treatment centres did not know how many patients suffered from osteoporosis, 40% estimated that half of their patients older than 45 years had osteoporosis and 20% estimated that 20% of their patients in this age group were affected. Patient screening for osteoporosis was done for all patients older than 45 years in 13% of centres, or for patients with risk factors and symptoms in 20% of centres. Risk factors and symptoms were described as HIV, HCV, family anamnesis, immobilization, low body weight or pain in the back. Frequency of screening was highest in patients with ailment (27%). Routine screening was conducted once or twice a year by 7% of centres each. Almost half of haemophilia centres did not screen for osteoporosis at all.

Most frequent methods for osteoporosis screening were measurement of basic laboratory parameters (40%) or of bone density (27%). When a diagnosis of osteoporosis was made, initiation of therapy was done by the therapist in the haemophilia centre (33%), an orthopaedist (33%), an endocrinologist (13%) or the general practitioner (13%). Osteoporosis therapies of choice were physiotherapy or functional training (73%), supplementation of calcium and/or vitamin D (73%), life style adaptation to bone health (67%), osteoporosis medication like Bisphosphonates (60%), or a combination of the methods above (7%).

Conclusions: The low number of participating haemophilia centres in the survey allows only a first impression of the status of osteoporosis management in Germany. Results indicated that routine osteoporosis screening is not widely performed. In view of the estimated prevalence of osteoporosis in patients with haemophilia older than 45 years of age, awareness campaigns could be recommended not only for patients with haemophilia, but also for physicians in haemophilia centres. Helpful measures could be the development of guidelines for osteoporosis screening and therapy in haemophilia and development of a decision guidance for timing and kind of involvement of specialists.

Frequency of osteoporosis screening (percent of haemophilia centres)