Background/Purpose: Systemic sclerosis (SSc) is a serious rare condition that can be complicated by internal organ damage including interstitial lung fibrosis (SSc-ILD), which is a major cause of mortality. The prognosis and course of disease is unpredictable and treatment is difficult with no approved treatment options for SSc-ILD. It is very challenging for patients and carers to get a clear understanding of the disease, treatment options and likely outcomes. This study explored and identified the information and communication needs of patients with SSc-ILD and their carers.

Methods: Qualitative research with 42 physicians who treat patients with SSc (rheumatologists, pulmonologists, internal medicine specialists, dermatologists), 21 patients with diagnosed SSc-ILD, 16 specialist nurses and 5 carers across 5 countries. Included individual in-depth interviews and observed conversations between pairs of patients, physicians and nurses discussing their experiences of SSc-ILD. All interactions were audio recorded, transcribed and analysed using linguistic techniques based on interactional sociolinguistic discourse analysis, to understand whether the information and emotional needs of patients and carers were met.

Results: Prognosis and mortality were the main unspoken topics acknowledged by patients, carers and healthcare professionals. These questions were difficult for physicians and nurses to definitively address, especially early in the disease. Patients and carers felt afraid to ask their physicians about mortality, and were unsure how to ask. Most physicians said that they tried to avoid the question because their duty was to give patients some optimism and hope, and not to cause them any additional distress. Other key questions for patients and carers were about relationships, family, and work. These were questions patients were often unable to ask their physicians because of time constraints or because they felt these were not topics their physicians should or would be concerned about. Often, specialist nurses felt that they had insufficient disease information or knowledge to provide sufficient support.

Conclusion: Topics of key importance to patients, carers, physicians and nurses, such as mortality and disease course, are rarely openly discussed, leaving patients uncertain and anxious about the future. By proactively facilitating communication about difficult but important topics, physicians and nurses could help patients and carers manage and plan their lives with SSc. This study shows that a multi-professional team based approach is likely to give better communication and address patient needs and priorities.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/things-left-unsaid-important-topics-that-are-not-discussed-between-patients-with-systemic-sclerosis-their-carers-and-their-healthcare-professionals/