Personalising haemophilia management with shared decision making

Leonard A Valentino; Victor Blanchette; Claude Negrier; Brian O’Mahony; Val Bias; Thomas Sannié; Mark W Skinner

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Personalising haemophilia management with shared decision making

The Journal of Haemophilia Practice

Volume 8 (2021): Numero 1 (January 2021)

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Article Category: Clinical Practice

Pubblicato online: 18 giu 2021

Pagine: 69 - 79

DOI: https://doi.org/10.17225/jhp00178

Parole chiave
Haemophilia, decision making, physician-patient relationships, decision support techniques, patient participation, patient-centred care, gene therapy

© 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

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

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.

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

eISSN:: 2055-3390
Lingua:: Inglese

Frequenza di pubblicazione:: Volume Open
Argomenti della rivista:: Medicine, Basic Medical Science, other, Clinical Medicine, Pharmacy, Pharmacology

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Personalising haemophilia management with shared decision making

Article Category: Clinical Practice

Pubblicato online: 18 giu 2021

Pagine: 69 - 79

DOI: https://doi.org/10.17225/jhp00178

Parole chiave
Haemophilia, decision making, physician-patient relationships, decision support techniques, patient participation, patient-centred care, gene therapy

© 2021 Leonard A Valentino et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

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Figure 3

Figure 4

Available examples and resources for shared decision making

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

Personalising haemophilia management with shared decision making

Article Category: Clinical Practice

Pubblicato online: 18 giu 2021

Pagine: 69 - 79

DOI: https://doi.org/10.17225/jhp00178

Parole chiaveHaemophilia, decision making, physician-patient relationships, decision support techniques, patient participation, patient-centred care, gene therapy

© 2021 Leonard A Valentino et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Figure 1

Figure 2

Figure 3

Figure 4

Available examples and resources for shared decision making

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

Parole chiave
Haemophilia, decision making, physician-patient relationships, decision support techniques, patient participation, patient-centred care, gene therapy