Abstract
SummaryWhat 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-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 careWhat 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.