Advanced search
Publication Cover
Expert Review of Hematology Volume 17, 2024 - Issue 6
Submit an article Journal homepage
302
Views
0
CrossRef citations to date
0
Altmetric
Editorial

How clinicians and persons with hemophilia may approach shared decision-making

Courtney D. Thornburga Hemophilia and Thrombosis Treatment Center, Rady Children’s Hospital San Diego Hemophilia and Thrombosis Treatment Center, San Diego, CA, USA;b Department of Pediatrics, UC San Diego School of Medicine, La Jolla, CA, USACorrespondence[email protected] [email protected]
ORCID Iconhttps://orcid.org/0000-0002-5665-8958View further author information
ORCID Icon &
Donna Coffinc World Federation of Hemophilia, Montréal, Québec, CanadaView further author information
Pages 193-196 | Received 27 Feb 2024, Accepted 07 May 2024, Published online: 11 May 2024

References

  • Athale A, Giguere A, Barbara A, et al. Developing a two-sided intervention to facilitate shared decision-making in haemophilia: decision boxes for clinicians and patient decision aids for patients. Haemophilia. 2014;20(6):800–806. doi: 10.1111/hae.12495
  • Astermark J, Blatný J, Königs C, et al. Considerations for shared decision management in previously untreated patients with hemophilia A or B. Ther Adv Hematol. 2023;14:20406207231165857. doi: 10.1177/20406207231165857
  • Pierce GF, Adediran M, Diop S, et al. Achieving access to haemophilia care in low-income and lower-middle-income countries: expanded humanitarian aid program of the world federation of hemophilia after 5 years. Lancet Haematol. 2022;9(9):e689–e697. doi: 10.1016/S2352-3026(22)00209-5
  • Roberts JC, Richardson S, Miles ME, et al. The GOAL-Hēm journey: shared decision making and patient-centred outcomes. Haemophilia. 2022;28(5):784–795. doi: 10.1111/hae.14608
  • Krist AH, Tong ST, Aycock RA, et al. Engaging patients in decision-making and behavior change to promote prevention. Stud Health Technol Inform. 2017;240:284–302. doi: 10.1146/annurev.me.29.020178.000301
  • Hermans C, Noone D, Benson G, et al. Hemophilia treatment in 2021: choosing the“optimal” treatment using an integrative, patient-oriented approach to shared decision-making between patients and clinicians. Blood Rev. 2022;52:100890.
  • National Bleeding Disorders Foundation Medical and Scientific Advisory Council (MASAC). MASAC document 282- MASAC recommendations on hemophilia treatment center preparedness for delivering gene therapy: National Bleeding Disorders Foundation. [cited 2024 Feb 10]. Availabe from: https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/masac-documents/masac-document-282-masac-recommendations-on-hemophilia-treatment-center-preparedness-for-delivering-gene-therapy-for-hemophilia.
  • Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020;26(Suppl 6):1–158. doi: 10.1111/hae.14046
  • WFH shared decision making tool. [cited 2024 Feb 14]. Available from: https://sdm.wfh.org.
  • Limjoco J, Thornburg CD. Gene therapy for hemophilia A: a mixed methods study of patient preferences and shared decision-making. Patient Prefer Adherence. 2023;17:1093–1105. doi: 10.2147/PPA.S406894
  • Limjoco J, Calatroni A, Aristizabal P, et al. Gene therapy preferences and informed decision-making: results from a national hemophilia foundation community voices in research survey. Haemophilia. 2023;29(1):51–60. doi: 10.1111/hae.14706
  • van Overbeeke E, Hauber B, Michelsen S, et al. Patient Preferences to Assess Value IN Gene therapies: protocol development for the PAVING study in hemophilia. Front Med. 2021;8:595797. doi: 10.3389/fmed.2021.595797
  • van Overbeeke E, Michelsen S, Hauber B, et al. Patient perspectives regarding gene therapy in haemophilia: interviews from the PAVING study. Haemophilia. 2021;27(1):129–136. doi: 10.1111/hae.14190
  • Witkop M, Morgan G, O’Hara J, et al. Patient preferences and priorities for haemophilia gene therapy in the US: a discrete choice experiment. Haemophilia. 2021;27(5):769–782. doi: 10.1111/hae.14383

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Order Reprints Request Corporate Permissions

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

Request Academic Permissions

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.