Takeda Pharmaceutical Company Limited, Lexington, Massachusetts, United States of America.
Verilogue, Philadelphia, Pennsylvania, United States of America.
PLoS One. 2021 Dec 2;16(12):e0260805. doi: 10.1371/journal.pone.0260805. eCollection 2021.
Hereditary angioedema (HAE) is a rare disease that manifests as recurrent and debilitating angioedema attacks, significantly impacting patients' quality of life.
To assess communication dynamics between patients with HAE and treating physicians and the impact this has on the treatment of HAE in the United States.
This observational study used an institutional review board-approved protocol to collect four sources of patient-physician communication data from the period between January 2015 and May 2017: in-office conversations between patients aged ≥18 years with HAE and physicians, follow-up dictations with physicians, telephone interviews with patients and physicians, and publicly available social media posts from patients. Participant language was qualitatively assessed and key communication elements and communication gaps identified.
Twenty-five in-office conversations, 14 follow-up physician dictations, and 17 telephone interviews were conducted with a total of 29 unique patients, 4 caregivers, and 14 physicians. In-office conversations were generally physician-driven and focused primarily on symptom frequency, location, and severity; lexicon from both parties centered on "episodes" and "swelling." During visits, impact on quality of life was not routinely assessed by physicians nor discussed proactively by patients; however, during telephone interviews and online, patients frequently described the multifaceted burden of HAE. Patients highlighted the difficulties they experience by using repetition, emphasis, and metaphors; they also varied the descriptors used for attacks depending on the communication goal. Physicians used intensifiers to emphasize the necessity of rescue medication access, whereas prophylactic treatments were positioned as an option for frequent or laryngeal attacks.
Vocabulary differences suggest that the full impact of HAE is not consistently communicated by patients to physicians during clinical visits, indicating the potential for misaligned understanding of disease burden. A patient-driven, rather than physician-driven approach to the discussions may elicit valuable information that could help to optimize treatment approaches.
遗传性血管性水肿（HAE）是一种罕见疾病，表现为反复发作且使人虚弱的血管性水肿发作，极大地影响了患者的生活质量。
评估 HAE 患者与治疗医生之间的沟通动态及其对美国 HAE 治疗的影响。
这项观察性研究使用机构审查委员会批准的方案，从 2015 年 1 月至 2017 年 5 月期间收集了四种 HAE 患者与医生沟通的数据来源：年龄≥18 岁的 HAE 患者与医生的门诊对话、与医生的随访听写、患者和医生的电话访谈以及患者的公开社交媒体帖子。对参与者的语言进行了定性评估，并确定了关键的沟通要素和沟通差距。
共对 29 名具有独特特征的患者、4 名照顾者和 14 名医生进行了 25 次门诊对话、14 次随访医生听写和 17 次电话访谈。门诊对话通常由医生主导，主要集中在症状的频率、位置和严重程度上；双方的词汇都集中在“发作”和“肿胀”上。在就诊期间，医生通常不会定期评估对生活质量的影响，患者也不会主动讨论；然而，在电话访谈和网络上，患者经常描述 HAE 的多方面负担。患者通过重复、强调和隐喻来突出他们所面临的困难；他们还根据沟通目标改变了对发作的描述。医生使用强调词来强调获得急救药物的必要性，而预防性治疗则被定位为频繁或喉部发作的一种选择。
词汇差异表明，在临床就诊期间，患者并未始终如一地将 HAE 的全部影响传达给医生，这表明对疾病负担的理解可能存在偏差。以患者为驱动，而不是以医生为驱动的讨论方法可能会引出有价值的信息，从而有助于优化治疗方法。
