How do doctors and patients communicate about the treatment of systemic sclerosis-associated interstitial lung disease? A plain language summary of publication

Abstract

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

physician–patient communication plain language summary of publications shared decision-making systemic sclerosis

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Footnotes

Acknowledgements

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.