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How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative
Laura Dennison1, Ellen McCloy Smith2, Katherine Bradbury1
1Academic Unit of Psychology, University of Southampton, Southampton, United Kingdom.
Plos One
|July 20, 2016
Summary
Multiple sclerosis patients desire clearer communication about prognosis but find forecasting emotionally difficult. Healthcare professionals need training on delivering prognosis information sensitively.
Area of Science:
- Neurology
- Psychology
- Patient Communication
Background:
- Prognosis in multiple sclerosis (MS) is variable and difficult to predict.
- Patient perspectives on prognostic uncertainty and communication are understudied.
- Understanding these factors is crucial for psychological adjustment and personalized prognosis tools.
Purpose of the Study:
- To explore patient experiences with prognostic uncertainty in MS.
- To investigate how patients form prognosis expectations.
- To understand current and desired prognosis communication with healthcare professionals (HCPs).
Main Methods:
- 15 MS patients were interviewed.
- Semi-structured interviews were analyzed using inductive thematic analysis.
Main Results:
- Patients reported unsatisfactory communication with HCPs regarding prognosis.
- MS patients develop personal prognosis beliefs with minimal HCP input.
- Patients are ambivalent about prognosis forecasting, viewing it as emotionally dangerous and of limited use.
Conclusions:
- HCPs require training on how, when, and whether to share prognosis information.
- Further research should explore predictors of patient attitudes towards prognostication.
- Identify conditions where prognostic forecasting benefits MS patients.
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