SummaryOne of many challenges in the treatment of persons with haemophilia is the selection and application of appropriate pain-relieving therapies. The current situation of pain management for persons with haemophilia in Germany was evaluated using a survey with the intention of identifying potential areas for improvement. Results of 685 respondents showed that 86% experienced episodes of pain and that pain was already present in 66% of children and adolescents. Joint pain was the most common type of pain (92%), remarkably so even in 80% of young patients. Half of the patients received pharmacological therapy for the pain and 46% of the patients received physiotherapy. Priority and sequence of the contacted physicians and therapists for diagnosis and therapy is described. Satisfaction with pain therapy was expressed by 56% of participants and 18% felt their pain not treated sufficiently. Conclusion: The results of the survey will be used to develop measures for improvement of long-term care of haemophilia patients regarding pain therapy.
Schlüsselwörter
ZusammenfassungPatienten mit Hämophilie können altersbedingte Probleme und Erkrankungen entwickeln. Um Fragestellungen des zunehmenden Alters bei Patienten mit Hämophilie besser einschätzen zu können, wurde ein Fragebogen an die Patientenorganisationen DHG und IGH versandt.Insgesamt 466 Personen nahmen an der Umfrage Teil (mittleres Alter: 50 Jahre, 21–85 Jahre), meist mit schwerer Hämophilie. Die Mehrheit der Befragten schätzte die Möglichkeit zur Substitution im Blutungsfall als sehr wichtig ein und äußerte Bedenken bezüglich der finanziellen Lage und der medizinischen Versorgung im Alter. Insgesamt gaben die Ergebnisse der Untersuchung Einblick in aus Patientensicht wichtige Themen der Versorgung der Hämophilie im Alter.
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