Denton Christopher P, Laird Bee, Moros Lizette, Flores Jose Luis Luna
Division of Medicine, Department of Inflammation, Centre for Rheumatology and Connective Tissue Diseases, Royal Free and University College Medical School, University College London, London, UK.
The Research Unit, Hove, UK.
Clin Rheumatol. 2020 Oct;39(10):2989-2998. doi: 10.1007/s10067-020-05063-x. Epub 2020 Apr 13.
Systemic sclerosis (SSc) is a rare, potentially life-threatening condition. The prognosis is difficult to predict, and treatment is complex. This can be difficult to understand or explain, posing challenges for effective physician-patient communication. Our study assessed communication between physicians and patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD) to identify information gaps and needs.
Twenty-three 20-min consultations between physicians (rheumatologists, pulmonologists) and patients (19 real, 4 actors) with diagnosed SSc-ILD across 6 countries were observed and recorded. Interactional sociolinguistic discourse analysis was used to understand the pattern and meaning of communication, whether the needs of both participants were met, and the level of understanding between participants.
In most consultations, patients were given little opportunity to explain their concerns or ask questions. Physicians used plain language but would revert to medical terminology for complex issues. Patients would also use medical terminology, despite not fully understanding the terms, which led to some physicians mistakenly believing that patients had a better understanding than they did. Differences in cognitive models between physicians and patients were often responsible for misunderstandings. However, during effective consultations, patients were invited to tell their story, and physicians used techniques to check and demonstrate understanding, express empathy and build rapport.
Communication challenges between physicians and patients limit joint understanding of SSc-ILD and may result in both parties misunderstanding important information and patients being less aware of self-help management approaches. Strategies should be developed with physicians to facilitate effective communication and increase patient understanding and support. Key Points • Physicians and patients have different explanatory models for SSc-ILD. • The differences between the physician-constructed model of SSc-ILD and the personal model patients construct often result in misunderstandings. • Many patients with SSc have learned the medical terminology for their condition, but their often limited understanding may lead to missed opportunities for physicians to provide clear explanations and correct misperceptions. • The style of consultation determines the information patients share and the degree to which they feel supported by, and confident in, their physicians' care.
系统性硬化症（SSc）是一种罕见的、可能危及生命的疾病。其预后难以预测，治疗也很复杂。这可能难以理解或解释，给有效的医患沟通带来挑战。我们的研究评估了医生与系统性硬化症相关间质性肺病（SSc-ILD）患者之间的沟通，以确定信息差距和需求。
观察并记录了6个国家的医生（风湿病学家、肺科医生）与确诊为SSc-ILD的患者（19名真实患者、4名演员）之间进行的23次时长20分钟的会诊。采用互动社会语言学话语分析来理解沟通的模式和意义、双方的需求是否得到满足以及参与者之间的理解程度。
在大多数会诊中，患者几乎没有机会解释他们的担忧或提问。医生使用通俗易懂的语言，但对于复杂问题会重新使用医学术语。患者也会使用医学术语，尽管并未完全理解这些术语，这导致一些医生错误地认为患者比实际理解得更好。医生和患者认知模式的差异常常导致误解。然而，在有效的会诊中，患者会被邀请讲述他们的情况，医生会使用技巧来检查并展示理解、表达同理心并建立融洽关系。
医患之间的沟通挑战限制了对SSc-ILD的共同理解，可能导致双方误解重要信息，患者对自助管理方法的了解也较少。应与医生共同制定策略，以促进有效沟通，增强患者的理解和支持。要点 • 医生和患者对SSc-ILD有不同的解释模型。 • 医生构建的SSc-ILD模型与患者构建的个人模型之间的差异常常导致误解。 • 许多SSc患者已经了解了其病情的医学术语，但他们通常有限的理解可能导致医生错过提供清晰解释和纠正误解的机会。 • 会诊风格决定了患者分享的信息以及他们在多大程度上感到得到医生护理的支持并对其有信心。
