Background
Multiple Sclerosis (MS) is an incurable and potentially progressive disease that produces a range of symptoms and impairments.
Health Professionals have traditionally been unable (and/or unwilling) to give patients specific predictions about how their own ‘version’ of the disease will pan out over time (i.e. their prognosis). However, huge datasets are now available about what has happened to many thousands of patients over long periods of time. Online tools will soon make it possible for patients themselves, or their healthcare professionals to generate, based on other similar people, predictions of short and long-term outcomes for a particular individual.
Is this a good thing? Do people with MS want to know? How might this information affect them?
My Work
I planned and directed two studies exploring how people with MS think and feel about communication about prognosis. One study involved in-depth interviews with 15 patients with MS. The other was a large questionnaire study of 3175 people with MS.
Together, these studies showed that people with MS tend to be dissatisfied with communication. Many express an interest in more information about their personal prognosis but have never spoken about this topic with their doctors. However, the interviews revealed the complexity of this issue. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of limited usefulness. Thinking about longer term prognosis doesn’t fit well with their attempts to remain positive and focussed on the present. After a few years of living with MS, people have usually formed their own beliefs about how their MS will behave, based on their own experiences so far.
These insights are useful for anyone communicating with people with MS or developing prognosis forecasting tools. A cautious and sensitive approach is needed, with due consideration of the likely usefulness and the emotional and practical impact.
Funding
None
Key Collaborators
Prof Ian Galea1,2
Ellen McCloy Smith1
Martina Brown 1,2
Dr Sarah Kirby1
Dr Katherine Bradbury1
- University of Southampton
- University Hospital Southampton NHS Foundation Trust
Related reports
Do people with multiple sclerosis want to know their prognosis? A UK nationwide study