The Importance of Shared Decision-Making in HAE Care

Allergy and immunology specialist, Kimberly Poarch, MPAS, PA-C, reviews the importance of shared decision-making for people with hereditary angioedema (HAE). Learn how to collaborate with your healthcare provider to discover the treatment options best suited to you.

As recently as 2008, there were limited on-demand or prophylactic treatments for hereditary angioedema (HAE). Thankfully, we are in a new moment. However, given the wide range of therapies available, each with distinct mechanisms of action, dosing schedules, and routes of administration, how can you determine which approach is right for you? The key is shared decision-making.

Shared decision-making is when medical providers and patients work together to determine a treatment best suited to the patient’s needs. In the case of HAE, this decision is informed by a patient’s medical history, experience with HAE attacks and treatments, and any relevant clinical information about the available therapies. Shared decision-making is widely regarded as an excellent method of matching patients with treatments. For it to work successfully, it is crucial for doctors and patients to collaborate.

While your healthcare provider is a medical expert who understands HAE and its treatments, they are not an expert on what matters most to you and your family when looking for your treatment plan. You are that expert in those matters! Shared decision-making recognizes that there are 2 experts at the table, each bringing essential knowledge to the conversation. Together, you can weigh and discuss the features of each treatment option alongside your preferences, life circumstances, and values, to choose the approach that works best for you.

To illustrate what shared decision-making looks like, I would like to share a story of how a person with HAE may find the right treatment for them.

Since she was a child, Kelly had experienced severe stomachaches and swelling, which caused her to miss social functions and holidays all through early adulthood. As she got older, her attacks affected her feet and hands. She figured her only solution was to live with unpredictable episodes and manage as best as she could.

After getting married, she set out to travel with her husband, but her swells and stomachaches had worsened, ruining her trips by keeping her in bed all day. Afraid her swells would eventually reach her throat, she visited an allergist who diagnosed her with HAE and put her on an androgen.

One day, her fear almost came to fruition. While at lunch with friends, her lips were swollen so severely they took her to the hospital. Close calls like this and subsequent hospital visits piled up. Frustrated and worried, Kelly met with her asthma and allergy specialist to discuss new treatment options. Considering her medical history, her job, which requires her to be on her feet, and her personal goal of traveling again, they decided on a different prophylactic treatment.

This is just one example of how shared decision-making can help you find a treatment that fits the unique grooves of your life.

Discover, Discuss, Decide

1) Discover
With your healthcare provider, review your unique needs and preferences. Discover your treatment options by listening to the available therapeutic choices.

2) Discuss
With your healthcare provider, discuss all the reasonable alternatives aligned to the needs and preferences you found in the Discover phase.

3) Decide
With your healthcare provider, make a treatment decision informed by a mutual understanding of available therapies and your unique needs.

To help jump-start this process, consider the list below of possible personal goals, personal treatment preferences, and medical history. If they sound relevant to you, bring them up to your healthcare provider or feel free to use them as a springboard for more ideas. Also, remember that it is OK if your needs and priorities change in different phases of your life.

Personal Goals

Desire to participate in specific activities (eg, travel, sports) with less fear of an HAE attack

Manage HAE-related limitations on work, school, and/or social functions

Family planning

Patient's support system

Personal Treatment Preferences

Minimize impact of disease on day-to-day living

Anxiety or fear of potential attacks

Mode of administration (subcutaneous injection, intravenous injection, oral)

Frequency of administration

Concerns about side effects