Summary
What is this summary about?
Systemic sclerosis (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 interstitial lung disease (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.
What were the results?
The key messages from the studies were:
Most patients felt uneasy when they were diagnosed with SSc-ILD
Good communication between doctors and patients at the first visit is crucial as it sets the tone for future relationships
Both 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 otherwise
Patients may feel intimidated by a doctor, which could interfere with communication
Doctors 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 journey
Doctors should avoid using a lot of technical terms. Patients felt metaphors helped them understand their condition better
Patients have different awareness, thoughts, and feelings about SSc-ILD than doctors. If doctors understand this, it may improve the communication between doctors and patients
Ways to close the gap between the way doctors and patients communicate include patients having the opportunity to access:
Self-learning and patient organizations
Peer-mentoring (patients mentoring other patients)
Information technology
Shared decision-making, where the doctor and patient work together to come to a decision about treatment and care
What do the results mean?
The 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.
Keywords: interstitial lung disease, physician–patient communication, plain language summary of publications, shared decision-making, systemic sclerosis
Acknowledgments
The authors meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE) and were fully responsible for all content and editorial decisions, and were involved at all stages of manuscript development. Medical writing assistance was provided by Nikita Vekaria, PhD, of Envision Ignite, an Envision Medical Communications agency, a part of Envision Pharma Group under the authors’ conceptual direction and based on feedback from the authors, and was contracted and compensated by Nippon Boehringer Ingelheim Co. Ltd. Nippon Boehringer Ingelheim was given the opportunity to review the manuscript for medical and scientific accuracy as well as intellectual property considerations.
Declarations
Ethics approval and consent to participate: Not applicable.
Consent for publication: Not applicable.
Author contributions: Masataka Kuwana: Conceptualization; Writing – original draft; Writing – review & editing.
Aiko Saito: Writing – review & editing.
Sue Farrington: Writing – review & editing.
Ilaria Galetti: Writing – review & editing.
Christopher P. Denton: Conceptualization; Writing – review & editing.
Dinesh Khanna: Conceptualization; Writing – review & editing.
Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: this review is based on roundtable discussions between the authors in Tokyo, Japan (3 December 2022) and at the 8th Systemic Sclerosis World Congress in Prague, Czech Republic (14–16 March 2024), sponsored by Nippon Boehringer Ingelheim Co. Ltd. and Boehringer Ingelheim, respectively.
The authors received no direct compensation related to the development of the manuscript. M.K. has received consulting fees, speaking fees, and research grants from Argenx, Asahi Kasei, AstraZeneca, Boehringer Ingelheim, Chugai, GlaxoSmithKline, Janssen, Kissei, MBL, Mitsubishi Tanabe, Mochida, Nippon Shinyaku, Ono Pharmaceuticals, and Taisho. A.S. is an employee of Nippon Boehringer Ingelheim Co. Ltd. S.F. and I.G. have nothing to disclose. C.P.D. reports consulting fees from Roche, Boehringer Ingelheim, GlaxoSmithKline, Horizon Therapeutics, CSL Behring; honoraria from Boehringer Ingelheim and Janssen; and grants from Horizon Therapeutics, GlaxoSmithKline, and Servier. D.K. reports consultancies with Amgen, Argnx, Astra Zeneca BMS, Boehringer Ingelheim, Genentech/Roche, GSK, Mitsubishi Tanabi, Merck, Novartis, and Zura Bio.
Availability of data and materials: Not applicable.