Wishes and worries of haemophilia patients. A patient survey from Bavaria.

Haemophilia care in Germany has achieved a high level and enables the majority of patients to lead a largely normal life. The Bluter Betreuung Bayern e.V. (BBB) aims to improve health care and support for haemophilia patients. A questionnaire has been developed by BBB representatives to evaluate unmet medical needs from the patient perspective. It was sent to 290 haemophilia patients and/or their parents in Bavaria in November 2015. The response rate was 51.4 %: 66 children aged < 15 years (66.7 % severe), 30 patients 15-24 years (66.7 % severe), 26 patients 25-44 years (80.8 % severe), 24 patients > 44 years (95.8 % severe). Prophylactic therapy in patients with severe haemophilia aged < 25 and ≥ 25 years is given "always" in ≥ 80 % and > 60 %, respectively. Substitution therapy is mostly uncomplicated. Satisfaction with medical care is high. Chronic pain is a problem with increasing age. Patients aged 25-44 years worry least regarding future health, safety and availability of factor products, patients > 44 years most. Overall, 80-100 % of the patients from all age groups are interested in information on the current state of science. Offers of the BBB for psychosocial support in addition to the medical care seem to be helpful and needed in all age groups.