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Personalising haemophilia management with shared decision making

Leonard A Valentino

Leonard A Valentino

Rush University, National Hemophilia FoundationChicago, USA
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Valentino, Leonard A
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Victor Blanchette

Victor Blanchette

Department of Pediatrics, University of Toronto and Division of Hematology/Oncology, Hospital for Sick ChildrenToronto, Canada
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Blanchette, Victor
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Claude Negrier

Claude Negrier

Unité d’Hemostase Clinique, Hôpital, Louis Pradel, Hospices Civils de Lyon, Université Claude BernardLyon, France
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Negrier, Claude
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Brian O’Mahony

Brian O’Mahony

Irish Haemophilia SocietyDublin, Ireland
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O’Mahony, Brian
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Val Bias

Val Bias

National Hemophilia FoundationNew York, USA
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Bias, Val
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Thomas Sannié

Thomas Sannié

Association française des hémophilesParis, France
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Sannié, Thomas
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Mark W Skinner

Mark W Skinner

Institute for Policy Advancement Ltd, McMaster UniversityWashington,
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18 giu 2021
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Categoria dell'articolo: Clinical Practice
Pubblicato online: 18 giu 2021
Pagine: 69 - 79
DOI: https://doi.org/10.17225/jhp00178
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© 2021 Leonard A Valentino et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
With the availability of novel therapies and gene therapy on the horizon, it is essential that the relationship between people with haemophilia and health care practitioners empowers them to make informed joint decisions about their treatment options
With the availability of novel therapies and gene therapy on the horizon, it is essential that the relationship between people with haemophilia and health care practitioners empowers them to make informed joint decisions about their treatment options

Figure 1

Models of SDM
Models of SDM

Figure 2

Factors affecting response to prophylaxis for haemophilia [25,56]
Factors affecting response to prophylaxis for haemophilia [25,56]

Figure 3

Recent treatment approvals and investigational treatments in haemophilia A and B treatmentApprovals are listed in chronological order from the date first approved (from either the FDA or EMA). Consizumab and fitusiran are agents currently under investigation for the treatment of haemophilia.
Recent treatment approvals and investigational treatments in haemophilia A and B treatmentApprovals are listed in chronological order from the date first approved (from either the FDA or EMA). Consizumab and fitusiran are agents currently under investigation for the treatment of haemophilia.

Figure 4

Peaks and troughs of factor levels and haemostasis differ between modalities [51]
Peaks and troughs of factor levels and haemostasis differ between modalities [51]

Available examples and resources for shared decision making

NAME DESCRIPTION URL
Ottawa Personal Decision Guides Designed to help people identify their decision making needs, plan the next steps, track their progress, and share their views about any health-related or social decisions https://decisionaid.ohri.ca/decguide.html
Laval University and McMaster University Prepares the clinician to discuss scientific evidence with the patient (or caregiver) so they can make an informed decision together https://www.boitedecision.ulaval.ca/fileadmin/documents/Boites_PDF/Prophylaxis/Dbox_prophylaxis_treatment_options_AN.pdf
The Mayo Clinic Shared Decision Making National Resource Center Advances patient-centred medical care by promoting shared decision making through the development, implementation, and assessment of patient decision aids and shared decision making techniques https://shareddecisions.mayoclinic.org/
Dartmouth-Hitchcock and the Dartmouth Institute Center for Shared Decision Making Provides patient decision aids, decision support counselling, and facilitation of advance care planning discussions https://www.dartmouth-hitchcock.org/shared-decision-making/resources
The National Learning Consortium SDM fact sheet with an overview of the process and links to other resources https://www.healthit.gov/sites/default/files/nlc_shared_decision_making_fact_sheet.pdf

Potential benefit and risk considerations for gene therapy for haemophilia [29,35,51,55]

POTENTIAL BENEFIT CONSIDERATIONS POTENTIAL RISK CONSIDERATIONS
One-time treatment modality Novel treatment approach with limited clinical experience to date
Evidence of potential clinical efficacy in clinical trials Limitations due to patient ineligibility
May decrease cost of treatment over time vs. prophylaxis or standard of care Potential immune response to treatment
May improve quality of life vs. other treatment modalities Limited clinical experience precludes availability of long-term safety data and durability
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Inglese
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Medicina, Scienze medicali di base, Scienze medicali di base, altro, Medicina clinica, Medicina clinica, altro, Farmacia, Farmacologia
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