Page 25 - HFA Dateline 2022 Special Edition

Shared Decision-Making in Hemophilia

This information is provided for educational purposes only and is not intended to replace discussions with
a health care provider. Please speak to your treatment team if you have any questions about your/your child's care.
This content is brought to you by Pfizer.

In shared decision-making, the patient and/or their caregiver Taking the Lead
collaborates with their health care team. The patient talks The health care team will often use a patient-centered
about their needs and concerns while the treatment plan is approach that takes shared decision-making into account.
created. Together, the team works to find the best fit for However, in some cases, patients and/or caregivers may
therapies and lifestyle changes that not only takes safety and need to take a more active role in advocating for themselves
efficacy into account but also patient preferences and goals. 1 and ensuring that their voices are heard.

Be a Part of the Team Connecting with other patients and attending support
Patients may find that having a treatment plan tailored to groups are ways to learn more about how to engage more
their lifestyle, priorities, and goals can be easier to follow. If effectively with the health care team. Pfizer's Patient
the plan doesn’t fit into one’s lifestyle, it won’t offer the best Affairs Liaisons can also be a source of helpful information
chance at managing hemophilia well. When patients work on shared decision-making; details on how to contact them
closely with their health care team and are encouraged to can be found at the bottom of this page. Taking the time to
communicate openly about treatment goals, it could lead to understand hemophilia, what treatment options are available,
an improved quality of life. and what one’s personal goals (and even family and friends'
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goals) are will all be a part of preparing for the shared
The process of shared decision-making in treatment decision-making process.
plans does mean that patients need to take some
responsibility for their own care. However, being prepared Available Decision Tools
for appointments and clearly discussing the impact of In the management of hemophilia, there are multiple
all the available treatment choices could lead to better therapies available. This is good from the aspect of patient
experiences and outcomes. choice, but it also means that putting together a plan
takes more thought and effort. There may not be a clear-cut
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Staying Plugged In path to developing the “best” plan. This is why patient
Part of being an empowered patient is being informed choice and comparing how options align with lifestyle and
about research and advances in new treatments. People preferences becomes important. Researchers and patient
who live with hemophilia have choices when it comes advocacy groups have developed tools that can help health
to prophylactic, on-demand, and perioperative therapies. care providers and patients work together to decide on a
plan. Some of these include:
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Advances in care and treatments for hemophilia are being These websites are neither owned nor controlled by Pfizer. Pfizer does not
made. Maintaining a connection with your care team to endorse and is not responsible for the content or services of these sites.
ask questions and get information about what options are • National Hemophilia Foundation: Products Licensed
right for you is key to staying informed. The staff at in the US, at www.pfi.sr/hemophilia-products
hemophilia treatment centers and hemophilia advocacy • Hemophilia Federation of America Dateline
groups are good sources of information on clinical trials, Federation, at: www.pfi.sr/hemophilia-spring
available treatments, and upcoming therapies.

References: 1. Nossair F, Thornburg CD. The role of patient and healthcare professionals in the era of new hemophilia treatments in developed and developing countries. Ther Adv
Hematol. 2018;9(8):239-249. doi:10.1177/2040620718784830 2. Sun HL, McIntosh KA, Squire SJ, et al. Patient powered prophylaxis: a 12-month study of individualized
prophylaxis in adults with severe haemophilia A. Haemophilia. 2017;23(6):877-883. doi:10.1111/hae.13319

Patient Affairs Liaisons are a team of non-sales, non-promotional field-based professionals.
Pfizer’s Patient Affairs Liaisons are dedicated to serving the rare disease community by connecting
patients and caregivers with Pfizer Rare Disease tools, including educational resources, access
support, and community events in your area.
Visit www.pfizerpal.com to connect with your Patient Affairs Liaison.

PP-HEM-USA-1561 © 2021 Pfizer Inc. All rights reserved. October 2021