| Summary: | Background: There is inherent uncertainty with a diagnosis of Clinically Isolated Syndrome (CIS), which can result in psychological distress for patients. This uncertainty and distress can be compounded by the way clinicians communicate the diagnosis. This study explored preferences for the communication of uncertainty in CIS, from the perspective of people with CIS and their spouses.
Methods: Semi-structured interviews and one focus group were completed with 11 individuals with a diagnosis of CIS and two spouses. Simulations of consultation sessions between patients with suspected CIS and neurologists formed the basis of discussions. Data were analysed using inductive-deductive thematic analysis.
Results: Four themes were generated from the analysis and are organised into a preferred order of conversation outlined by participants. Creating a relationship where patients feel cared for provides the foundation for the delivery of a CIS diagnosis and its uncertainties. Neurologists can help patients process the uncertain diagnosis by helping CIS to feel more tangible and concrete by naming the diagnosis and providing a clear explanation of CIS supported by visual evidence (e.g., scan results). When introducing multiple sclerosis as a potential prognosis, neurologists should preserve hope whilst communicating this reality. Neurologists can help patients feel more in control of future uncertainty by presenting a clear plan with access to support.
Conclusions: Our findings identify preferences for how people with CIS and their spouses would like uncertainty to be communicated that can help to reduce patient distress, which can inform neurologists in their clinical practice.
|
|---|