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An interactive, discussion-based event led by our leading international expert panel, covering topics surrounding unique patient journeys in HAE. These include treatment goals, the challenges associated with disease management, and the impact on patient quality of life.
View the full webinar with discussions HERE
How the HAE treatment journey has progressed, Professor Marcus Maurer, Germany
Which attacks should we treat and what are the considerations for selecting a particular treatment? Dr. Danny Cohn, Netherlands
What are the goals of prophylaxis in HAE? Dr. Mar Guilarte, Spain
What is the impact of on-demand treatment and prophylaxis on QoL, beyond managing attacks? Professor Markus Magerl, Germany
The importance of patient education, patient-physician interaction and ultimately shared decision-making when tailoring HAE treatment, Dr. Danny Cohn, Netherlands
The future journey of HAE patients – managing breakthrough attacks, Dr. Mar Guilarte, Spain
How to assess the outcome of therapy – what outcomes are most relevant? Professor Markus Magerl, Germany
Introduction: How the HAE treatment journey has progressed
Professor Marcus Maurer
Professor Maurer introduces the webinar with an overview of how the HAE treatment journey has progressed over the years, and what the most recent WAO/EAACI guidelines recommend in terms of treatment goals.
Duration: 02:47
Which attacks should we treat and what are the considerations for selecting a particular treatment?
Dr. Danny Cohn
Dr. Danny Cohn provides his rationale for treating all attacks, and summarises the latest guidelines, while noting some key considerations when selecting treatments.
Duration: 05:40
Discussion
- What if patients feel that it’s not necessary to treat mild attacks?
- Does it make sense to treat at the point of prodrome?
- Should we still recommend that patients have 2 doses of medication at home even if they have very infrequent attacks while on prophylaxis?
Duration: 06:37
What are the goals of prophylaxis?
Dr. Mar Guilarte
Dr. Guilarte uses a patient case to highlight the various goals of long-term prophylaxis and the need to individualise treatment.
Duration: 04:05
Discussion
- Are the goals of treatment the same for all patients?
- Should we still consider short-term prophylaxis, e.g. before surgery, in patients that are completely controlled by long-term prophylaxis?
- How do we ensure patients are not ‘lost in nature’ due to self-administration and fewer visits to the physician?
- Is there a number of acceptable breakthrough attacks before switching to a different prophylaxis treatment?
- What is the minimum time required to evaluate whether long-term prophylaxis is effective?
Duration: 12:20
What is the impact of on-demand treatment and prophylaxis on QoL, beyond managing attacks?
Professor Markus Magerl
Professor Magerl introduces the topic of treatment outcomes beyond managing attacks, drawing on some of his personal experiences from patients that have switched from on-demand treatment to long-term prophylaxis.
Duration: 04:30
Discussion
- Does the psychological impairment lag behind the improvement in clinical wellbeing? At what point do patients trust that they may live a normal life without fear of an attack?
- To what extent do we, as physicians, encourage patients to live a normal life?
- Should this be the patient’s decision or part of the patient education regarding new treatment options?
Duration: 06:32
The importance of patient education, patient-physician interaction and ultimately shared decision-making when tailoring HAE treatment
Dr. Danny Cohn
Dr. Cohn introduces the process of shared decision-making in HAE, referring to guidelines and Delphi statements that also support the need for adequate patient education and shared decision-making.
Duration: 03:09
Discussion
- Are there any specific tools that we don’t have that could aid with shared decision-making?
- What aids do you use in your clinical practice to help with shared decision-making?
- Are there generational differences in the way you approach shared decision-making? Are there differences in the patient’s proactivity with treatment?
- Would you consider down-dosing long-term prophylaxis in patients that have completely controlled HAE?
Duration: 11:27
The future journey of HAE patients – managing breakthrough attacks
Dr. Mar Guilarte
Again, using an interesting patient case, Dr. Guilarte explains the requirement for patient management plans, and posits what the future patient journey may look like.
Duration: 02:44
Discussion
- When patients experience a breakthrough attack, should on-demand treatment have a different mode of action?
- Why do patients experience breakthrough attacks?
- Do you notice that patients with well-controlled HAE become complacent and stop taking treatment?
- Have you seen that in your patients on long-term prophylaxis, prodromes are different/non-existent for breakthrough attacks?
Duration: 08:16
How to assess the outcome of therapy – what outcomes are most relevant?
Professor Markus Magerl
To conclude, Professor Magerl introduces the need for patient-reported outcome measures (PROMs) as a measure of treatment efficacy in the absence of suitable biomarkers. He provides an overview of the various methods available and his personal experience of their use.
Duration: 05:28
Discussion
- Are there any apps or a need for apps to monitor treatment outcomes?
- Do you use different PROMs at different frequencies depending on whether a patient switches treatment?
- Have physicians adapted to using video calls with digital questionnaires since the COVID-19 pandemic?
- Would showing a patient their functional C1-INH levels help explain/reassure them that their treatment is working?
- Often severity of attacks is subjective – how can we navigate this better, e.g. by the use of biomarkers?
- How do you assess disease control in children with HAE?
Duration: 12:30
Full recording
Managing HAE along unique patient journeys: Let’s discuss goals and challenges of treatment
Duration: 01:32:05
