Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals—a discourse analysis

INTRODUCTION: Systemic sclerosis (SSc) is a rare condition that can be complicated by interstitial lung fibrosis (SSc-ILD)—a major cause of mortality. This study explored information and communication needs of patients with SSc-ILD and their carers to understand what they are and whether they are met. METHODS: Qualitative research was performed, including in-depth individual interviews and observed conversations between pairs of patients, physicians and nurses, and between patients and physicians discussing experiences of SSc-ILD. The study was performed in Germany, Italy, Spain, the UK and the USA. Participants included 42 SSc-treating physicians, 21 patients with diagnosed SSc-ILD, 16 specialist nurses and five carers. RESULTS: Prognosis and mortality were the main unspoken topics acknowledged by patients, carers and healthcare professionals. Patients and carers felt afraid to ask physicians about mortality, and most physicians reported avoiding the question because their duty was to give patients hope and avoid causing additional distress. Patients often felt unable to ask physicians about relationships, family and work because of time constraints or because they felt these were not topics physicians would be concerned about. Often, specialist nurses felt that they had insufficient knowledge to provide adequate support. CONCLUSION: Key topics, including mortality and prognosis, are rarely openly discussed, leaving patients uncertain and anxious about the future. By communicating about difficult but important topics, physicians and nurses could help patients and carers manage and plan their lives. This study shows that a multi-professional team-based communication approach is likely to better address patient needs and priorities. KEY POINTS: • Key topics in SSc or SSc-ILD, such as mortality and prognosis, are rarely openly discussed in clinical consultations. • By communicating difficult but important topics, physicians and nurses could help patients manage their disease and plan their lives. • A multi-professional team-based communication approach is likely to better address patient needs and priorities and could be easily implemented without the need for significant additional resources.