Kuwana Masataka, Saito Aiko, Farrington Sue, Galetti Ilaria, Denton Christopher P, Khanna Dinesh
Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, Tokyo, Japan.
Nippon Boehringer Ingelheim Co. Ltd., Tokyo, Japan.
Ther Adv Respir Dis. 2025 Jan-Dec;19:17534666251371814. doi: 10.1177/17534666251371814. Epub 2025 Sep 28.
Summary (SSc) is a condition that affects the immune system (the body's natural defence system) and causes the skin to harden and thicken in large patches. Research shows that 30% to 90% of people with SSc also have (ILD), a condition that causes inflammation and scarring of the lungs. When people have SSc and ILD, it is known as SSc-associated ILD or SSc-ILD. The authors of this plain language summary of publication (PLS-P) reviewed different articles to find out what the key issues were in the way doctors and patients with SSc-ILD communicate with each other.The key messages from the studies were:Most patients felt uneasy when they were diagnosed with SSc-ILDGood communication between doctors and patients at the first visit is crucial as it sets the tone for future relationshipsBoth doctors and patients avoid talking about how SSc-ILD symptoms may get worse (prognosis) or the subject of death. Patients should be encouraged to ask questions to address important and personal topics that would not be talked about otherwisePatients may feel intimidated by a doctor, which could interfere with communicationDoctors must be able to listen and show empathy to build a relationship with patients and be aware that different communication styles may suit a patient during different stages in their journeyDoctors should avoid using a lot of technical terms. Patients felt metaphors helped them understand their condition betterPatients have different awareness, thoughts, and feelings about SSc-ILD than doctors. If doctors understand this, it may improve the communication between doctors and patientsWays to close the gap between the way doctors and patients communicate include patients having the opportunity to access:Self-learning and patient organizationsPeer-mentoring (patients mentoring other patients)Information technologyShared decision-making, where the doctor and patient work together to come to a decision about treatment and careThe best way to improve the feelings patients have when they are diagnosed with SSc, including SSc-ILD, is to improve the quality of the communication between doctors and patients. The quality of the first meeting between a doctor and patient sets the tone for future checkups, especially if the doctor can listen, show empathy, and allow the patient to ask questions. Improving the patient's knowledge about SSc-ILD, for example by using websites, reading printed materials, or taking part in peer-mentoring schemes, may also contribute to a better conversation.
系统性硬化症（SSc）是一种影响免疫系统（人体自然防御系统）的疾病，会导致皮肤大片变硬和增厚。研究表明，30%至90%的系统性硬化症患者还患有间质性肺疾病（ILD），这是一种会导致肺部炎症和瘢痕形成的疾病。当人们同时患有系统性硬化症和间质性肺疾病时，就称为系统性硬化症相关间质性肺疾病或SSc-ILD。本出版物简明语言摘要（PLS-P）的作者查阅了不同文章，以找出系统性硬化症相关间质性肺疾病患者与医生之间沟通方式的关键问题。研究得出的关键信息如下：
大多数患者在被诊断出患有系统性硬化症相关间质性肺疾病时会感到不安
初诊时医生与患者之间的良好沟通至关重要，因为它为未来的医患关系奠定基调
医生和患者都避免谈论系统性硬化症相关间质性肺疾病症状可能如何恶化（预后）或死亡话题。应鼓励患者提问，以探讨那些否则不会被提及的重要且私人的话题
患者可能会因医生而感到 intimidated，这可能会干扰沟通
医生必须能够倾听并表达同理心，以与患者建立关系，并意识到在患者病程的不同阶段，不同的沟通方式可能适合该患者
医生应避免使用过多专业术语。患者认为比喻能帮助他们更好地理解自己的病情
患者对系统性硬化症相关间质性肺疾病的认知、想法和感受与医生不同。如果医生理解这一点，可能会改善医患之间的沟通
自我学习和患者组织
同伴指导（患者指导其他患者）
信息技术
共同决策，即医生和患者共同做出关于治疗和护理的决定
改善患者在被诊断出患有包括系统性硬化症相关间质性肺疾病在内的系统性硬化症时的感受的最佳方法，是提高医生与患者之间的沟通质量。医生与患者首次会面的质量为未来的检查奠定基调，尤其是如果医生能够倾听、表达同理心并允许患者提问。例如，通过使用网站、阅读印刷材料或参加同伴指导计划来提高患者对系统性硬化症相关间质性肺疾病的了解，也可能有助于进行更好的交流。
