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DOI: 10.5482/HAMO-14-03-0021
Pain therapy in haemophilia in Germany
Patient survey (BESTH study)Schmerztherapie bei Hämophilie in DeutschlandPatienten-Befragung (BESTH)This study was initiated in cooperation with two patient organisations in Germany, the Deutsche Hämophiliegesellschaft (DGH) and the Interessengemeinschaft Hämophiler (IGH). The authors would like to thank all members and patients and parents of patients for their support of the study and Andrea Trawinski for assistance in medical writing (paid by Bayer HealthCare Germany). The study was supported by an unrestricted educational grant from Bayer HealthCare Germany.
Publication History
received:
20 March 2014
accepted in revised form:
29 October 2014
Publication Date:
28 December 2017 (online)
Summary
One 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.
Zusammenfassung
Eine unter vielen Herausforderungen bei der Behandlung von Personen mit Hämophilie ist die Auswahl und Verabreichung angemessener schmerzlindernder Therapien. Die gegenwärtige Praxis der Schmerzbehandlung bei Hämophilie-Patienten wurde mit Hilfe einer Patientenumfrage evaluiert, um potenzielle Verbesserungsmöglichkeiten identifizieren zu können. Die Ergebnisse aus 685 beantworteten Fragebögen zeigten, dass bei 86% der Patienten Schmerzzustände aufgetreten sind und bereits 66% der Kinder und Jugendlichen betroffen waren. Gelenkschmerz war insgesamt die häufigste Schmerzart (92%), bemerkenswerterweise auch bei 80% der jungen Patienten. Die Hälfte der Patienten wurde medikamentös gegen die Schmerzen behandelt und 46% erhielten Physiotherapie. Die Priorität und Reihenfolge der Kontakte der Patienten zu Ärzten und Therapeuten für eine Schmerzdiagnose und -therapie wird beschrieben. 56% der Teilnehmer waren mit der Schmerztherapie zufrieden, 18% fanden ihre Schmerzen nicht ausreichend behandelt.
Schlussfolgerung
Die Erkenntnisse aus der Umfrage sollen zur Entwicklung geeigneter Maßnahmen dienen, um die Langzeitbetreuung der Hämophilie-Patienten hinsichtlich Schmerztherapie zu verbessern.
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