Optimizing conversations on treatment management in hereditary angioedema: healthcare professional and patient perspectives on long-term prophylaxis and shared decision-making

INTRODUCTION: Hereditary angioedema (HAE), characterized by unpredictable attacks of subcutaneous or submucosal edema, can significantly impact patient quality of life (QoL). Despite advances in long-term prophylaxis (LTP), achieving complete control of HAE is challenging, making shared decision-making (SDM) critical for tailored HAE management. This investigation explores the dynamics of healthcare professional (HCP)-patient conversations concerning HAE management, and identifies barriers to SDM, LTP initiation and strategies that may overcome these to optimize patient QoL. METHODS: The investigation was conducted in Germany. HCPs managing patients with HAE participated in 60 min interviews and led simulated patient consultations. 30 min interviews with patients with HAE were also conducted. RESULTS: Ten HCPs and eight patients with HAE were interviewed. In the simulated consultations, most HCPs recommended LTP based on high attack frequency and substantial impact on QoL. Interviews revealed that HCPs typically initiate discussions on LTP by assessing disease burden, focusing on attack frequency and QoL. These treatment discussions also highlighted the need for improved communication with patients about the LTP treatments that are available to them. However, many HCPs lacked awareness of updated treatment guidelines and faced challenges in reassuring patients about the long-term safety and efficacy of newer LTP options. All patients who were initiated on LTP experienced positive results, including improved QoL and reduced fear of attacks. Those who declined LTP cited low attack frequency on their acute treatment and concerns about burden of treatment and long-term effects. Key barriers to effective SDM included time constraints during routine consultations, absence of clear SDM guidance, and a lack of jargon-free information to foster proactive patient engagement. CONCLUSION: This research highlights opportunities to enhance HCP-patient conversations concerning the management of HAE. Inconsistencies between positive patient experiences with LTP and real-world prescription rates emphasize the need for improved SDM practices. Enhancing HCP awareness of patient perspectives, managing time constraints in consultations, and providing unbiased, patient-friendly information may help bridge these gaps and improve communication and ultimately patient QoL. The findings underscore the importance of further research to develop guidelines that prioritize SDM and patient empowerment in HAE management.