For individuals living with hereditary angioedema (HAE) in the UK, their journey often begins with uncertainty, misdiagnosis and fragmented care.
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Many endure years of unexplained symptoms and multiple referrals before receiving an accurate diagnosis, often while managing the physical and emotional toll of an unpredictable condition.[1] These challenges are compounded by inconsistent access to specialist services and a lack of coordinated support. In our previous “Bridging the gap in hereditary angioedema care” article, we explored these challenges and outlined key recommendations to improve care, as detailed in our recent white paper. Building on that foundation, this follow-up piece focuses on a pivotal recommendation: making truly individualised patient care a reality through shared decision making (SDM).
Why SDM matters in HAE
HAE poses a unique and evolving challenge for those living with the disease, as it presents differently in every individual. No two patients experience HAE in the same way; the severity, frequency, and impact of attacks vary significantly.[2] Even within individuals, the disease can shift unpredictably over time, requiring a flexible, individualised approach. In this context, access to innovative therapies and a commitment to SDM become essential pillars of effective HAE management, empowering patients and clinicians to adapt treatment as needs change. Care must address the specific, often invisible burden HAE places on each person, not just physical attacks, but also the emotional toll and impact on mental wellbeing and quality of life.
Barriers to effective SDM in HAE
While SDM supports better care and aligns with the government’s long-term NHS vision, making it routine in HAE care is not always straightforward. Because HAE is rare, many healthcare professionals outside specialist centres may have limited familiarity with its presentation and management. This can hinder informed conversations and result in patients not being offered the full range of treatment options available.
For patients, understanding their condition can be difficult, and many people defer to their healthcare professional, leaving them less confident to voice preferences or question the treatment they are offered. Restrictive clinical guidelines, often focused solely on attack frequency rather than the broader impact of HAE on a patient’s life[3], can further limit the scope for individualised care, even when clinicians are ready to engage in a productive dialogue. This can risk overlooking the wider emotional, social and professional impact of living with HAE.
What SDM should look like in HAE
Operationalising SDM in HAE requires discovering each patient’s current needs:
- Consultations should begin with open dialogue to uncover clinical, emotional and practical needs, including the impact of HAE on daily life.
- Exploring treatment options: Healthcare professionals should clearly explain all available treatments, including risks, benefits and access criteria.
- Making a joint decision: Together, the healthcare professional and patient should combine clinical expertise with personal preferences to agree on an individualised care plan.
- Creating an individualised action plan: Outcomes should be documented in a care plan that reflects the patient’s preferences and agreed pathway, supporting continuity and timely response to attacks.
International guidelines recommend that on-demand treatment be considered for every HAE attack, regardless of location or intensity, and that patients carry sufficient medication at all times.[4] Embedding these principles into SDM conversations will help patients feel more in control and reduce the risk of avoidable complications.
How do we get there?
Implementing SDM requires concerted effort across the health system, and there are key areas for change:
- Embed SDM consistently across all specialist centres: It must be integral to every consultation, supported by leadership, training and a culture of patient partnership.
- Support patient confidence and preparedness: Patients need help to understand their condition, recognise attack patterns and feel confident using on-demand treatment early. Patient groups play a vital role in building this confidence and encouraging active participation.
Job code: MAT-UNB-GB-0012
Date of preparation: November 2025
References
[1] Henao MP, Craig T, Kraschnewski J, Kelbel T. Diagnosis and screening of patients with hereditary angioedema in primary care. Ther Clin Risk Manag. 2016;12:701-711. doi: https://doi.org/10.2147/tcrm.s86293
[2] HAE UK. Living with HAE. Available at: https://www.haeuk.org/what-is-hae/living-with-hae/ Last accessed: November 2025
[3] Yong PFK, Annals R, Diwakar L, et al. Prophylaxis in hereditary angioedema: a United Kingdom Delphi consensus. Clin Exp Immunol. 2024; 217(1):109-116. doi: https://doi.org/10.1093/cei/uxae020
[4] Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema —The 2021 revision and update. Allergy. 2022;77(7). doi: https://doi.org/10.1111/all.15214
