New research from England indicates that healthcare providers do not communicate enough with their patients about the possible outcomes for their multiple sclerosis (MS).
The study, “How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study,“ appeared in the journal PLoS One.
People with MS and their families may feel that there is a lack of education and information from their healthcare providers about the possible consequences of the disease. This can make it difficult to plan for the future and possibly induce stress due to uncertainty.
The research team, led by Laura Dennison of the Academic Unit of Psychology, University of Southampton in England, wanted to collect information on how healthcare providers communicate with their MS patients about the disease prognosis. The scientists asked 15 people with MS to fill out in-depth interviews, then used a technique called thematic analysis to examine the content of the interviews.
A total of six themes recurred during the interviews, including: unsatisfactory communication with healthcare providers, issues of uncertainty associated with MS-disease outcomes, and problems with accepting that uncertainty. Many patients felt confused about their future and wanted to stay focused on the present. Several of the participants reported that healthcare providers discussed their MS prognosis only minimally.
Overall, the researchers concluded that “[Healthcare providers] must carefully consider whether, when, and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited [Healthcare providers]-patient communication, distinguish predictors of patients’ attitudes towards prognostication, and identify circumstances under which prognostic forecasting benefits patients.”
The study indicated that communication about MS prognosis is an area that deserves further study. However, the study analysis was highly qualitative and only included a small number of participants. Additional work on the topic of healthcare provider communication about MS disease outcomes would be beneficial for further informing clinicians about optimal MS treatment.
Clinical guidelines from the National Institute of Clinical Excellence encourage open and honest communication between healthcare providers and people with MS, although there is a lack of specific recommendations. In particular, clinicians may need further guidance and training about how to speak with MS patients about the possible long-term effects of their disease.