International Journal of Clinical Pharmacy

, Volume 38, Issue 1, pp 61–69 | Cite as

Treatment-related knowledge and skills of patients with haemophilia and their informal caregivers

  • Teddy NovaisEmail author
  • Antoine Duclos
  • Remi Varin
  • Isabelle Lopez
  • Valérie Chamouard
Research Article


Background Replacement therapy in haemophilia plays an important role in the effective management of this rare bleeding disorder and requires a high level of knowledge and practical skills. Objective To evaluate and to compare the knowledge and skills about the medicines and their management among people with haemophilia treated with clotting factor concentrates, and their informal caregivers. Setting Eight Hospital Pharmacies working closely with Haemophilia Care Centres in France. Method In this cross-sectional and multi-centre study, 26-item questionnaire was specifically developed to assess the knowledge and skills. Face-to-face interviews using a questionnaire were conducted with patients and caregivers. Main outcome measure Level of knowledge and skills about disease, treatment and medication management. Results This study included 80 patients and 55 caregivers. Although most interviewees had basic knowledge of the treatment, only 43.7 % knew the effect of clotting factor concentrates on the haemostasis process. Similarly, only 12.7 % of the patients and 30.9 % of the caregivers referred to inhibitors as adverse effects. Despite intensive training for home treatment, 55.7 % reported difficulties with reconstitution or injection. The knowledge required for the responsible management of their medications had not been totally acquired: only 17 participants were indeed familiar with the medication storage conditions; 29 patients and 9 caregivers had already experienced an emergency which they had to treat with no medicine available at home; and 47.4 % of participants had already thrown away an unused drug vial. Conclusion This study shows the need of a regular update and to renew awareness of haemophilia treatment specificities among these populations. The identified needs suggest that we should more invest in educational techniques or therapeutic education programs more focused on medication management.


Caregivers France Haemophilia Knowledge Patients Skills Treatment 



The authors particularly thank all the patients and caregivers who participated in the study. We also thank the pharmacists who agreed to participate in this study: D. Hettler (Reims), K. E. Toguyeni (Lille), A. C. Gerout (Strasbourg), M. Dufour (Rouen) and E. Pelus (Colmar); as well as the HCCs of Lyon (Louis Pradel Hospital: S. Meunier, A. Lienhart, C. Négrier, A. Garcia, C. Lefranc, M. Gineste, M. Merzaq) and Paris (Cochin Hospital: N. Stieltjes, V. Roussel) for their cooperation and the development of the questionnaire.



Conflicts of interest

The authors have no conflicts of interest to declare.

Supplementary material

11096_2015_207_MOESM1_ESM.docx (83 kb)
Supplementary material 1 (DOCX 83 kb)


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Copyright information

© Koninklijke Nederlandse Maatschappij ter bevordering der Pharmacie 2015

Authors and Affiliations

  • Teddy Novais
    • 1
    Email author
  • Antoine Duclos
    • 2
  • Remi Varin
    • 3
    • 4
  • Isabelle Lopez
    • 4
    • 5
  • Valérie Chamouard
    • 1
    • 4
  1. 1.Haemophilia Care Center, Groupement Hospitalier EstHospices Civils de LyonBronFrance
  2. 2.Department of Medical Information – Evaluation – Research (IMER)Hospices Civils de LyonLyonFrance
  3. 3.PharmacyCentre Hospitalier Régional Universitaire de RouenRouenFrance
  4. 4.Groupe PERMEDES (Plateforme d’Echange et de Recherche sur les Médicaments DErivés du Sang et analogues recombinants) de la Société Française de Pharmacie CliniqueParisFrance
  5. 5.Pharmacy, Hôpital CochinAssistance Publique des Hôpitaux de ParisParisFrance

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