Kuwana, Masataka; Saito, Aiko; Farrington, Sue; Galetti, Ilaria; Denton, Christopher P; Khanna, Dinesh; (2025) Physician–patient communication in the treatment of systemic sclerosis–associated interstitial lung disease: A narrative review and recommendations. Journal of Scleroderma and Related Disorders 10.1177/23971983251324803. (In press).

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Abstract

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.

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