Abstract
INTRODUCTION: Systemic sclerosis (SSc) is a rare, potentially life-threatening condition. The prognosis is difficult to predict, and treatment is complex. This can be difficult to understand or explain, posing challenges for effective physician-patient communication. Our study assessed communication between physicians and patients with systemic sclerosis-associated interstitial lung disease (SSc-ILD) to identify information gaps and needs. METHODS: Twenty-three 20-min consultations between physicians (rheumatologists, pulmonologists) and patients (19 real, 4 actors) with diagnosed SSc-ILD across 6 countries were observed and recorded. Interactional sociolinguistic discourse analysis was used to understand the pattern and meaning of communication, whether the needs of both participants were met, and the level of understanding between participants. RESULTS: In most consultations, patients were given little opportunity to explain their concerns or ask questions. Physicians used plain language but would revert to medical terminology for complex issues. Patients would also use medical terminology, despite not fully understanding the terms, which led to some physicians mistakenly believing that patients had a better understanding than they did. Differences in cognitive models between physicians and patients were often responsible for misunderstandings. However, during effective consultations, patients were invited to tell their story, and physicians used techniques to check and demonstrate understanding, express empathy and build rapport. CONCLUSIONS: Communication challenges between physicians and patients limit joint understanding of SSc-ILD and may result in both parties misunderstanding important information and patients being less aware of self-help management approaches. Strategies should be developed with physicians to facilitate effective communication and increase patient understanding and support. Key Points • Physicians and patients have different explanatory models for SSc-ILD. • The differences between the physician-constructed model of SSc-ILD and the personal model patients construct often result in misunderstandings. • Many patients with SSc have learned the medical terminology for their condition, but their often limited understanding may lead to missed opportunities for physicians to provide clear explanations and correct misperceptions. • The style of consultation determines the information patients share and the degree to which they feel supported by, and confident in, their physicians' care.