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Lessons from a qualitative study of treatment experiences and perceptions in people with haemophilia in France Cover

Lessons from a qualitative study of treatment experiences and perceptions in people with haemophilia in France

Open Access
|Apr 2025

References

  1. Berntorp E, Fischer K, Hart DP, et al. Haemophilia. Nat Rev Dis Primers 2021; 7(1): 45. doi: 10.1038/s41572-021-00278-x.
  2. Bolton-Maggs PH, Pasi KJ. Haemophilias A and B. Lancet 2003; 361(9371): 1801–1809. doi: 10.1016/S0140-6736(03)13405-8.
  3. Morfini M, Haya S, Tagariello G, et al. European study on orthopaedic status of haemophilia patients with inhibitors. Haemophilia 2007; 13(5): 606–612. doi: 10.1111/j.1365-2516.2007.01518.x.
  4. Gringeri A, Mantovani LG, Scalone L, Mannucci PM. Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood 2003; 102(7): 2358–2363. doi: 10.1182/blood-2003-03-0941.
  5. Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia 2020; 26: 1–158. doi: 10.1111/hae.14046.
  6. Morfini M, Zanon E. Emerging drugs for the treatment of hemophilia A and B. Expert Opin Emerg Dr 2016; 21(3): 301–313. doi: 10.1080/14728214.2016.1220536.
  7. Blair HA. Emicizumab: a review in haemophilia A. Drugs 2019; 79(15): 1697–1707. doi: 10.1007/s40265-019-01200-2.
  8. Chamouard V, Freyssenge J, Duport G, et al. Evaluation of the care pathway in the context of the dispensing of emicizumab (Hemlibra) in community and hospital pharmacies in France: A patient satisfaction survey. Haemophilia 2023; 29(6): 1490–1498. doi: 10.1111/hae.14857.
  9. Hermans C, Makris M. Disruptive technology and hemophilia care: The multiple impacts of emicizumab. Res Pract Thromb Haemost 2021; 5(4): e12508. doi: 10.1002/rth2.12508.
  10. Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence 2017: 11: 1677–1686. doi: 10.2147/PPA.S139851.
  11. Vidal. Hemophilia A: Hemlibra available in the city. 2021. Available from https://www.vidal.fr/actualites/27284-hemophilie-a-mise-a-disposition-en-ville-d-hemlibra.html (accessed March 2024).
  12. Chamouard V, Fraticelli L, Freyssenge J, et al. Phareo study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders. J Clin Pharm Ther 2022; 47(10): 1667–1675. doi: 10.1111/jcpt.13718.
  13. Leroy V, Freyssenge J, Renard F, Tazarourte K, Négrier C, Chamouard V. Access to treatment among persons with hemophilia: a spatial analysis assessment in the Rhone-Alpes region, France. J Am Pharm Assoc 2019; 59(6): 797–803. doi: 10.1016/j.japh.2019.07.006.
  14. Frybourg S, Remuzat C, Kornfeld Å, Toumi M. Conflict of interest in Health Technology Assessment decisions: case law in France and impact on reimbursement decisions. J Mark Access Health Policy 2015; 3(1): 25682. doi: 10.3402/jmahp.v3.25682.
  15. Savage J. Ethnography and health care. Br Med J 2000; 321(7273): 1400–1402. doi: 10.1136/bmj.321.7273.1400.
  16. Strudwick RM. Ethnographic research in healthcare – patients and service users as participants. Disabil Rehabil 2021; 43(22): 3271–3275. doi: 10.1080/09638288.2020.1741695.
  17. Grain Intelligence Inc. Grain. 2023. Available from https://grain.com/ (accessed 2023).
  18. QSR International. NVIVO. Version 14, 2023. Available from https://help-nv.qsrinternational.com/14/win/Content/about-nvivo/about-nvivo.htm (accessed April 2023).
  19. Hughes T, Brok-Kristensen M, Gargeya Y, et al. Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study. J Haem Pract 2020; 7(1): 158–164. doi: 10.17225/jhp00168.
  20. Hughes T, Brok-Kristensen M, Gargeya Y, et al. “What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia. J Haem Pract 2020; 7(1): 25–36. doi: 10.17225/jhp00151.
  21. Tischer B, Marino R, Napolitano M. Patient preferences in the treatment of hemophilia A: impact of storage conditions on product choice. Patient Prefer Adherence 2018; 12: 431–441. doi: 10.2147/PPA.S151812.
  22. Fornari A, Antonazzo IC, Rocino A, et al. The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey. Haemophilia 2024; 30(2): 449–462. doi: 10.1111/hae.14926.
  23. Wiley RE, Khoury CP, Snihur AW, et al. From the voices of people with haemophilia A and their caregivers: challenges with current treatment, their impact on quality of life and desired improvements in future therapies. Haemophilia 2019; 25(3): 433–440. doi: 10.1111/hae.13754.
  24. Garcia VC, Mansfield C, Pierce A, Leach C, Smith JC, Afonso M. Patient and caregiver preferences for haemophilia treatments: A discrete-choice experiment. Haemophilia 2024; 30(2): 375–387. doi: 10.1111/hae.14928.
  25. von der Lippe C, Frich JC, Harris A, Solbrække KN. Treatment of hemophilia: a qualitative study of mothers’ perspectives. Pediatric Blood Cancer 2017; 64(1): 121–127. doi: 10.1002/pbc.26167.
  26. Ballmann J, Ewers M. Nurse-led education of people with bleeding disorders and their caregivers: A scoping review. Haemophilia 2022; 28(6): e153–e163. doi: 10.1111/hae.14629.
  27. Schrijvers L, Bedford M, Elfvinge P, Andritschke K, Leenders B, Harrington C. The role of the European haemophilia nurse. J Haem Pract 2014; 1(1): 24–27. doi: 10.17225/jhp.00008.
  28. Hermans C, Pierce GF. Towards achieving a haemophilia-free mind. Haemophilia 2023; 29(4): 951–953. doi: 10.1111/hae.14807.
  29. Hughes T, Brok-Kristensen M, Gargeya Y, et al. “He’s a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care. J Haem Pract 2020; 7(1): 150–157. doi: 10.17225/jhp00167.
  30. Mannucci P. AIDS, hepatitis and hemophilia in the 1980s: memoirs from an insider. J Thromb Haemost 2003; 1(10): 2065–2069. doi: 10.1046/j.1538-7836.2003.00483.x.
  31. Potì S, Palareti L, Emiliani F, Rodorigo G, Valdrè L. The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen. Int J Adolesc Youth 2018; 23(2): 133–144. doi: 10.1080/02673843.2017.1299017.
  32. duTreil S. Physical and psychosocial challenges in adult hemophilia patients with inhibitors. J Blood Med 2014: 5: 115–122. doi: 10.2147/JBM.S63265.
  33. Recht M, Konkle B, Jackson S, Neufeld E, Rockwood K, Pipe S. Recognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era. Haemophilia 2016; 22(6): 825–832. doi: 10.1111/hae.13066.
  34. Krumb E, Hermans C. Living with a “hemophilia-free mind” – The new ambition of hemophilia care? Res Pract Thromb Haemost 2021; 5(5): e12567. doi: 10.1002/rth2.12567.
  35. Forsyth A, Gregory M, Nugent D, et al. Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics. Haemophilia 2014; 20(1): 44–51. doi: 10.1111/hae.12239.
  36. Goodson L, Vassar M. An overview of ethnography in healthcare and medical education research. J Educ Eval Health Prof 2011; 8: 4. doi: 10.3352/jeehp.2011.8.4.
Language: English
Page range: 48 - 56
Published on: Apr 12, 2025
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 times per year

© 2025 Sabine-Marie Castet, Lola Sepot-Boucherit, Nicolas Beranger, Stephanie Delienne, Valérie Chamouard, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.