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.
J Scleroderma Relat Disord. 2025 Mar 20:23971983251324803. doi: 10.1177/23971983251324803.
Interstitial lung disease is a common complication and cause of mortality in patients with systemic sclerosis. Pharmacotherapy for systemic sclerosis-associated interstitial lung disease was mostly limited to off-label use of immunosuppressive drugs until recently, when two drugs became licenced for this condition: nintedanib, an antifibrotic agent, and tocilizumab, a targeted anti-inflammatory/immunomodulatory therapy licenced in the United States. In chronic diseases, communication between physicians and patients is associated with treatment adherence, patient satisfaction, and clinical outcomes. This review of physician-patient communication during systemic sclerosis-associated interstitial lung disease treatment covers key issues identified by studies in Japan, the United States and Europe, as well as the clinical experience, opinion, and recommendations of the physician and patient advocate authors. As discussed, recent surveys in Japan found low usage of guideline-recommended immunosuppressive drugs for systemic sclerosis-associated interstitial lung disease and physician dissatisfaction with them. Physicians and patients in Japan also had differing perceptions about what had been said during consultations, suggesting the need to improve physician-patient communication. Other studies in Japan, the United States and Europe made several key findings. Notably, most patients feel uneasy at the diagnosis of systemic sclerosis-associated interstitial lung disease, and both physicians and patients avoid discussing prognosis and mortality. Furthermore, a white-coat barrier hinders patients raising topics important to them. For physicians, listening and empathy may be key for building rapport with patients. Importantly, physicians and patients have different cognitive models of systemic sclerosis-associated interstitial lung disease, creating communication challenges. There are also similarities and differences in clinical practice and physician-patient communication between countries that are important to consider. From the patient's perspective, key factors include the quality of the first consultation, physician empathy and active listening, and space to ask questions. Efforts to improve physician-patient communication include peer mentoring, patient self-education (such as the 'Self-Manage Scleroderma' website from the University of Michigan), and shared decision-making - although not all activities will necessarily be appropriate everywhere.
间质性肺病是系统性硬化症患者常见的并发症及死亡原因。直到最近，系统性硬化症相关间质性肺病的药物治疗大多局限于免疫抑制药物的非适应证使用，而现在有两种药物获批用于该病症：抗纤维化药物尼达尼布以及在美国获批的靶向抗炎/免疫调节疗法托珠单抗。在慢性病中，医患沟通与治疗依从性、患者满意度及临床结局相关。本综述涵盖了日本、美国和欧洲研究中确定的关键问题，以及医生和患者权益倡导者作者的临床经验、观点和建议，探讨了系统性硬化症相关间质性肺病治疗期间的医患沟通。如前所述，日本最近的调查发现，系统性硬化症相关间质性肺病患者对指南推荐的免疫抑制药物使用率较低，医生对这些药物也不满意。日本的医生和患者对会诊期间所说内容的看法也存在差异，这表明需要改善医患沟通。日本、美国和欧洲的其他研究得出了几个关键发现。值得注意的是，大多数患者在被诊断为系统性硬化症相关间质性肺病时会感到不安，医生和患者都避免讨论预后和死亡率。此外，“白大褂障碍”阻碍患者提出对他们重要的话题。对医生来说，倾听和同理心可能是与患者建立融洽关系的关键。重要的是，医生和患者对系统性硬化症相关间质性肺病有不同的认知模式，这带来了沟通挑战。各国在临床实践和医患沟通方面也存在异同，这些都值得考虑。从患者的角度来看，关键因素包括首次会诊的质量、医生的同理心和积极倾听，以及提问的空间。改善医患沟通的努力包括同伴指导、患者自我教育（如密歇根大学的“自我管理硬皮病”网站）以及共同决策——尽管并非所有活动在各地都必然适用。
