PDF herunterladen
Hamostaseologie 2015; 35(02): 167-173
DOI: 10.5482/HAMO-14-03-0021
Original article
Schattauer GmbH

Pain therapy in haemophilia in Germany

Patient survey (BESTH study)Schmerztherapie bei Hämophilie in DeutschlandPatienten-Befragung (BESTH)
W. Kalnins
1   Deutsche Hämophilie Gesellschaft (DHG), Hamburg
,
G. Schelle
2   Interessengemeinschaft Hämophiler (IGH), Bonn
,
K. Jost
3   Bayer HealthCare, Leverkusen
,
W. Eberl
4   Städtisches Klinikum Braunschweig
,
A. Tiede
5   Medizinische Hochschule Hannover
› InstitutsangabenThis 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.
Weitere Informationen

Publikationsverlauf

received: 20. März 2014

accepted in revised form: 29. Oktober 2014

Publikationsdatum:
28. Dezember 2017 (online)

Auch verfügbar auf
    Lizenzen und Reprints

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.

Keywords

Haemophilia - pain management - survey

Schlüsselwörter

Hämophilie - Schmerzmanagement - Umfrage
 

  • References

  • 1 Hilberg T, Czepa D, Freialdenhoven D, Boettger MK. Joint pain in people with hemophilia depends on joint status. Pain 2011; 152: 2029-2035.
    CrossrefPubMedGoogle Scholar
  • 2 Wallny T, Lahaye L, Brackmann HH. et al. Clinical and radiographic scores in haemophilic arthropathies: how well do these correlate to subjective pain status and daily activities?. Haemophilia 2002; 08: 802-808.
    CrossrefPubMedGoogle Scholar
  • 3 Poon JL, Zhou ZY, Doctor JN. et al. Quality of life in haemophilia A: Hemophilia Utilization Group Study Va (HUGS-Va). Haemophilia 2012; 18: 699-707.
    CrossrefPubMedGoogle Scholar
  • 4 Van Genderen FR, van Meeteren NL, Fischer K, Helders PJ. Determinants of participation in patients with severe haemophilia. Haemophilia 2012; 18: 860-867.
    CrossrefPubMedGoogle Scholar
  • 5 Riley RR, Witkop M, Hellman E, Akins S. Assessment and management of pain in haemophilia patients. Haemophilia 2011; 17: 839-845.
    CrossrefPubMedGoogle Scholar
  • 6 Von Mackensen S, Campos IG, Acquadro C, Strandberg-Larsen M. Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents. Haemophilia 2013; 19: e73-e83.
    CrossrefPubMedGoogle Scholar
  • 7 Schumacher J, Brähler E. The prevalence of pain in the German population: results of populationbased studies with the Giessen Subjective Complaints List (GiessenerBeschwerdebogen GBB). Schmerz 1999; 13: 375-384.
    CrossrefPubMedGoogle Scholar
  • 8 Wallny T, Hess L, Seuser A. et al. Pain status of patients with severe haemophilic arthropathy. Haemophilia 2001; 07: 453-458.
    CrossrefPubMedGoogle Scholar
  • 9 Holstein K, Klamroth R, Richards M. et al. European Haemophilia Therapy Standardization Board. Pain management in patients with haemophilia: a European survey. Haemophilia 2012; 18: 743-752 #
    CrossrefPubMedGoogle Scholar
  • 10 www.who.int/cancer/palliative/painladder/en/
    PubMed
  • 11 Witkop M, Lambing A, Divine G, Kachalsky E, Rushlow D, Dinnen J. A national study of pain in the bleeding disorders community: a description of haemophilia pain. Haemophilia 2012; 18: e115-e119.
    CrossrefPubMedGoogle Scholar
  • 12 Elander J, Barry T. Analgesic use and pain coping among patients with haemophilia. Haemophilia 2003; 09: 202-213.
    CrossrefPubMedGoogle Scholar
  • 13 Choiniere M, Melzack R. Acute and chronic pain in hemophilia. Pain 1987; 31: 317-331.
    CrossrefPubMedGoogle Scholar
  • 14 Klamroth R, Pollmann H, Hermans C. et al. The relative burden of haemophilia A and the impact of target joint development on health-related quality of life: results from the ADVATE Post-uthorization Safety Surveillance (PASS) study. Haemophilia 2011; 17: 412-421.
    CrossrefPubMedGoogle Scholar
  • 15 Leeb BF, Andel I, Leder S. et al. The patient’s perspective and rheumatoid arthritis disease activity indexes. Rheumatology 2005; 44: 360-365.
    CrossrefPubMedGoogle Scholar
  • 16 Takahashi N, Sasaki K, Nishiyama T, Naniwa T. Satisfaction and attitudes toward therapy in patients with rheumatoid arthritis. Modern Rheumatology 2012; 22 (03) 376-381.
    CrossrefPubMedGoogle Scholar
  • 17 Wolfe F, Michaud K. Proposed metrics for the determination of rheumatoid arthritis outcome and treatment success and failure. J Rheumatology 2009; 36: 27-33.
    PubMedGoogle Scholar
  • 18 Dworkin RH, Jensen MP, Gould E. et al. Treatment satisfaction is osteoarthritis and chronic low back pain: the role of pain, physical and emotional functioning, sleep, and adverse events. J Pain 2011; 12: 416-424.
    CrossrefPubMedGoogle Scholar
  • 19 Nyiendo J, Haas M, Goldberg B, Sexton G. Pain, disability, and satisfaction outcomes and predictors of outcomes: a practice-based study of chronic low back pain patients attending primary care and chiropractic physicians. J Manipulative Physiol Ther 2001; 24: 433-439.
    CrossrefPubMedGoogle Scholar
  • 20 Manco-Johnson MJ, Abshire TC, Shapiro AD. et al. Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia. N Engl J Med 2007; 357: 535-544.
    CrossrefPubMedGoogle Scholar
  • 21 Buzzard BM. Physiotherapy for prevention and treatment of chronic hemophilic synovitis. Clin Orthop 1997; 343: 42-46.
    PubMedGoogle Scholar
  • 22 Solimeno L, Luck J, Fondanesche C. et al. Knee arthropathy: when things go wrong. Haemophilia 2012; 18 (Suppl. 04) 105-111.
    CrossrefPubMedGoogle Scholar
  • 23 Santavirta N, Solovieva S, Helkama O. et al. Musculoskeletal pain and functional ability in haemophilia A and B. Physiotherapy and rehabilitation in haemophilia patients. Rheumatol Int 2001; 21: 15-19.
    CrossrefPubMedGoogle Scholar
  • 24 Elander J, Morris J. Randomized trial of a DVD intervention to improve readiness to self-manage joint pain. Pain 2011; 152: 2333-2341.
    CrossrefPubMedGoogle Scholar