Conversations between doctors and patients about long-term preventive treatment for hereditary angioedema often stall before they truly begin, according to a qualitative investigation conducted in Germany and published in the journal Allergy, Asthma & Clinical Immunology. The study, led by Markus Magerl of Charité and colleagues, combined interviews with simulated patient consultations to examine how healthcare professionals and people living with the rare genetic disorder actually talk about long-term prophylaxis, the class of medications taken regularly to reduce the frequency of attacks. Its central finding is a striking mismatch: patients who started long-term prophylaxis reported noticeably better quality of life and less fear of attacks, yet many patients never revisit the topic after a first conversation, and clinicians frequently discuss only one or two of the available treatment options.
Hereditary angioedema is a rare genetic disorder marked by unpredictable attacks of subcutaneous or submucosal swelling that vary in frequency, severity and location. The condition carries substantial morbidity because attacks can impair daily activities, curb social life and reduce productivity at work or school. Laryngeal attacks, which more than half of patients experience at some point in their lives, pose a life-threatening risk, since swelling of the airway can lead to asphyxiation and, in some cases, death. Effective long-term prophylaxis options developed over the past decade offer a degree of attack control that traditional acute, on-demand medications alone cannot provide, and updated guidelines from the World Allergy Organization and the European Academy of Allergy and Clinical Immunology now define the primary goals of treatment as complete disease control and normalization of patients’ lives, outcomes the authors say are currently attainable only with long-term prophylaxis.
The investigation was carried out between 20 and 27 October 2022, with all conversations conducted in German and later translated into English for analysis. Researchers recruited participants from a pre-existing independent database panel, supplemented by patient advisory and advocacy groups in Germany. Ten healthcare professionals, including dermatologists, allergists, ENT specialists, pediatricians, immunologists and internists, met the inclusion criteria: each had been in practice for three to thirty-five years, was currently managing at least three patients with type 1 or type 2 hereditary angioedema, personally made treatment decisions, and was open to discussing or recommending long-term prophylaxis when appropriate. Eight patients took part, all formally diagnosed with type 1 or type 2 disease for at least twelve months, all prescribed acute treatment, and all with prior experience of discussing long-term prophylaxis with a clinician. The professionals completed sixty-minute interviews, patients thirty-minute telephone interviews, and each clinician led two simulated consultations with actors portraying standardized patient personas.
The simulated consultations were designed to probe how clinicians weigh eligibility. In the first persona, the patient experienced frequent attacks with significant quality-of-life impairment but expressed reluctance toward prophylaxis because of prior negative experiences with androgens. Nine of the ten clinicians recommended long-term prophylaxis, citing the high attack frequency, the physical demands of the patient’s work, the patient’s emotional state, a history of a life-threatening attack and a high score on an angioedema-specific quality-of-life measure. One clinician declined, citing the patient’s previous liver cell adenoma, and said reconsideration would require assurance that the adenoma carried a low risk of malignant progression. Most clinicians reassured the reluctant patient about the improved efficacy and safety of current options, explored preferences for oral versus injectable treatment, provided information leaflets and suggested a follow-up appointment for further shared decision-making.
The second persona presented a borderline case: low attack frequency, moderate quality-of-life impairment and strong patient interest in starting prophylaxis. Eight of ten clinicians recommended long-term prophylaxis here as well, basing their rationale primarily on the substantial impact of symptoms on quality of life and the stress of work-related travel rather than on attack counts alone. When the persona was adjusted to make eligibility even more borderline, two of eight clinicians still declined to recommend prophylaxis, arguing that the patient was managing symptoms superbly well and that a threshold of twelve to twenty-four attacks per year would be needed to justify prescribing. Over half of the clinicians in this scenario discussed the patient’s pregnancy plans, reflecting the lack of consensus on prophylaxis and acute treatment use during pregnancy, and recommended seeking specialist genetic advice. Only one or two specific prophylaxis options were explored in these encounters, and one clinician raised insurance coverage considerations given the low attack frequency.
The interviews with clinicians revealed how such decisions are made in everyday practice. Clinicians typically initiate discussions about long-term prophylaxis themselves; only a minority of patients raise the topic proactively. The main trigger is perceived disease burden, encompassing both physical limitations in daily activities, work, hobbies and travel, and the emotional weight of stress, fear and anxiety surrounding attacks. Attack frequency and severity also matter, but clinicians less aware of recent guideline updates tend to base eligibility on the number of attacks per year, with local thresholds varying from more than six to more than twelve attacks annually. Discussions are more likely when patients experience laryngeal or facial attacks, when swelling affects a body region that impairs the ability to work, or when attacks resolve slowly. Clinicians also weigh the patient’s ability to manage acute treatment, the likelihood of adherence, and lifestyle factors such as travel habits and consistency in carrying emergency medication.
Guideline awareness emerged as a significant gap. Half of the interviewed clinicians, five of ten, were aware of the updated WAO/EAACI guidelines, but three of those lacked specific knowledge about what the updates entailed. Those who were aware felt the new guidance aligned with their existing approach, which emphasizes attack severity and quality of life rather than sheer attack counts, whereas those with limited awareness tended to recommend prophylaxis based on frequency. Despite the guidelines listing plasma-derived C1-esterase inhibitors, lanadelumab and berotralstat as first-line long-term prophylaxis options for type 1 or type 2 disease, clinicians in practice predominantly discussed only one or two options with patients, choosing mainly on the basis of potential attack-frequency reduction, with long-term safety and side effects often considered secondary. A recurring challenge was reassuring patients about the long-term safety of newer treatments, for which long-term data were limited at the time, along with the difficulty of motivating patients to overcome the hurdle of self-injection.
Patients painted a complementary picture. Half of the eight interviewed patients, four in total, had started long-term prophylaxis after initial discussions with their clinicians, driven by the significant impact of the disease on their daily lives; two of these were androgen recipients who began before HAE-targeted prophylaxis was available, and two used HAE-targeted therapy. The four patients who declined prophylaxis cited perceived low attack frequency, the burden of bi-monthly healthcare visits for drug administration, concerns about the lack of long-term data, the benefit-to-risk profile, the inconvenience of self-injection, treatment cost and potential drug interactions. LTP-naïve patients said they would consider prophylaxis if attacks became more frequent, roughly one to two per quarter instead of two to three per year, and expressed preferences for oral medication or less frequent injections, alongside requests for practical information about logistics, appointment scheduling and waiting times. Notably, half of the patients never revisited the prophylaxis discussion after the initial conversation, even though guidelines recommend evaluating patients for long-term prophylaxis at every visit.
For those who did start treatment, the reported experience was largely positive. The four prophylaxis users described notable improvements in quality of life, fewer attacks and minimal side effects, saying the therapy allowed them to return to work, hobbies, family care and travel, and relieved the constant fear of attacks. Some even reported being attack free, although the authors caution this may not be directly attributable to treatment. Among patients who revisited the discussion, two of the four androgen recipients chose to switch to an HAE-targeted prophylaxis, while the two LTP-naïve patients again declined, citing low attack frequency and a preference for more long-term safety data. The authors note that open-label extension trials completed after this research confirmed the long-term efficacy and safety of newer prophylaxis treatments, information clinicians can now use to address patient concerns more accurately, while still acknowledging that unpredictable episodes may occur even on therapy.
The study identifies three principal barriers to effective shared decision-making: time constraints during routine consultations, the absence of clear guidance on how to implement shared decision-making in practice, and a lack of jargon-free information that would foster proactive patient engagement. Patients said short appointments left them feeling rushed and uncertain, and requested longer consultations and clearer language. The authors, whose qualitative analysis was conducted by an independent research agency separate from the industry funder, also point to limitations: all participants lived in Germany, the simulated consultation format may have elicited atypical prescribing behavior, and the participating clinicians had heterogeneous experience, so findings should be interpreted as exploratory and may not generalize to other healthcare systems. They call for future research to develop structured guidance, including patient-friendly summaries of the guidelines and potentially SMART questions to structure conversations, so that patients can be recognized as experts in their own experience of the disease and empowered to participate fully in treatment decisions.
Subject of Research: Barriers to shared decision-making about long-term prophylaxis in hereditary angioedema care in Germany
Article Title: Optimizing conversations on treatment management in hereditary angioedema: healthcare professional and patient perspectives on long-term prophylaxis and shared decision-making
Article References: Magerl, M., Aygören-Pürsün, E., Greve, J., Recke, A., Staubach-Renz, P., Martinez-Saguer, I., Schauf, L., Langenbacher, D., Christmas, D., Ray, T., & Pohl, S. (2026). Optimizing conversations on treatment management in hereditary angioedema: healthcare professional and patient perspectives on long-term prophylaxis and shared decision-making. Allergy, Asthma & Clinical Immunology, 22(1), Article 44. https://doi.org/10.1186/s13223-026-01049-7
Image Credits: AI Generated
DOI: 10.1186/s13223-026-01049-7
Keywords: hereditary angioedema, long-term prophylaxis, shared decision-making, healthcare professionals, patient interviews, simulated consultations, WAO/EAACI guidelines, quality of life, treatment barriers, qualitative research, Germany, rare disease
News Source: Ophelia Keating. (October 30, 2026). Doctors and patients see hereditary angioedema prophylaxis differently, German study finds. Scienmag.
