Informed doctors help patients navigate HAE treatment options
Staying up to date helps alleviate fears, promote shared decisions
Written by |
People with hereditary angioedema (HAE) often have misgivings about the long-term safety and feasibility of preventive treatments, so it’s crucial that their doctors stay up to date on research and guidelines to provide accurate information and facilitate collaborative treatment decisions, a study found.
“This research highlights the need to optimize conversations between [healthcare providers] and patients on [long-term preventive treatment] for the management of HAE through [shared decision making],” the researchers wrote.
Doctors need an “understanding of both the treatment burden and disease burden, for patients, caregivers, and families,” the scientists wrote. “Managing time constraints in routine consultations, ensuring access to reliable and patient-friendly information on [preventive treatment], and providing [healthcare providers] with clear guidance on how to implement a patient-centered approach to [shared decision making] in clinical practice are key components required for its successful implementation in clinical practice.”
The study, “Optimizing conversations on treatment management in hereditary angioedema: healthcare professional and patient perspectives on long-term prophylaxis and shared decision-making,” was published in Allergy, Asthma & Clinical Immunology.
HAE is a genetic disorder marked by swelling attacks. Several angioedema treatment options are widely available for long-term prophylaxis (preventive treatment), which can substantially reduce the risk of these attacks.
Current guidelines suggest that HAE treatment should aim to entirely control the disease so that patients experience few, if any, swelling attacks. This is usually only possible with long-term prophylactic treatment. But the guidelines also emphasize that decisions about long-term treatment need to be made collaboratively, based on discussions between patients and their healthcare providers.
To help facilitate these discussions, researchers set out to better understand how doctors and patients approach discussions about long-term prophylaxis. They interviewed 10 healthcare providers and eight patients in Germany.
The researchers asked the doctors about how they generally approach these discussions, and had them demonstrate how they would speak with hypothetical patients.
They found that when doctors consider whether to recommend long-term prophylaxis, they usually look at two key factors: the frequency of attacks and the impact of attacks on patients’ quality of life. Doctors were more likely to recommend long-term treatment if patients were having many attacks and/or if attacks were causing substantial problems in patients’ day-to-day lives.
Patients, however, often were hesitant about starting long-term treatment, especially if they felt their disease was reasonably well controlled with on-demand treatments. Patients expressed concerns about long-term efficacy and potential side effects, and were wary of an added treatment burden, especially for therapies given by injection.
“Our research indicates that one of the greatest challenges for [healthcare providers] in conversations with patients is reassuring them about the long-term efficacy and safety of [long-term prophylaxis, as patients want this information before considering starting treatment,” the researchers wrote.
The researchers noted that many doctors were unaware of the most recent guidelines for managing HAE, further underscoring the importance of staying up to date with the latest research and guidelines.
“It is essential for [healthcare providers] to stay up to date with the latest research findings so that they can accurately communicate this to patients, emphasizing that, although [prophylactic] treatment has demonstrated a favorable safety and efficacy profile in terms of reducing attacks, unpredictable episodes may still occur,” they wrote.
“By acknowledging patient concerns and providing accurate information, [healthcare providers] can foster a collaborative dialogue that supports informed decision-making and [shared decision-making], ultimately enhancing the well-being of individuals with HAE,” they added.
The scientists called for further work to develop resources that can help healthcare providers stay on top of the latest research and navigate nuanced discussions within the time constraints of clinical visits.
Leave a comment
Fill in the required fields to post. Your email address will not be published.