Studying How People with Multiple Sclerosis Experience Prognostic Uncertainty

Venturing into largely unexplored territory, researchers from the University of Southampton conducted interviews with MS patients to determine their emotional response to their interactions with healthcare professionals, as it pertained to their prognoses. The study determines increased sensitivity, awareness, and attention may be needed among HCPs to best communicate with their MS patients.

Through interviews with patients, researchers found that multiple sclerosis (MS) patients don’t necessarily appreciate prognostic forecasting, and that healthcare providers may need specific training in order to decide when or whether to share such information. The study, conducted by Laura Dennison and colleagues from the University of Southampton in the United Kingdom, was published in PLOS One in July 2016.

The researchers undertook the study, in part due to the fact that little research existed to address the question of how patients emotionally respond to prognoses from healthcare professionals (HCPs). The researchers “explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication.”

Using semi-structured telephone interviews, the team collected information from 15 people with MS regarding their experiences with healthcare providers and prognostic predictions. They identified six common themes: “Experiencing unsatisfactory communication with HCPs, appreciating and accepting prognostic uncertainty, trying to stay present-focused, forming and editing personal prognosis beliefs, ambivalence towards forecasting the future, and prognosis information delivery.”

Although there are significant limitations to this study, the researchers believe that several findings should be applied in clinical practice. For example, the study highlights the fact that an MS prognosis is an extremely emotional event and patients may require emotional support. The study stresses the need for HCPs to engage patients with early conversations that stress the high variability of MS progression. Additionally, the researchers found that not all MS patients want, or benefit from, detailed prognostic forecasts, and HCPs should be sensitive to individual patient needs.

The researchers conclude by acknowledging that there is more work to be done, and suggesting that “Exploration of the relationships between a wide range of clinical characteristics and the prognosis-related beliefs, expectations, experiences and preferences of pwMS [people with multiple sclerosis] could be a valuable direction for future research.”