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MS research update – Do people want to know about the future course of their MS? – 17 January 2017

Summary

Multiple sclerosis is hugely variable from person to person so predicting someone's prognosis, that is how MS might affect them in the future, is difficult. Tools are being developed to predict someone's future course of MS more accurately but there has been little research into how people feel about being given their own personal prognosis.

UK researchers selected a small group of 15 people who were representative of the different types of MS, time from diagnosis, age and gender. In-depth telephone interviews using a set of open-ended questions were recorded and analysed.

People recognised and accepted that MS is a variable condition and were in two minds about finding out more about the future course of their MS; they often coped with uncertainty by focusing on the here-and-now rather than worrying about the future. Often prognosis information was not considered useful as participants did not believe it would change anything for them. Reasons for wishing to know more about MS prognosis included weighing up benefits and risks of treatment choices, making financial and practical plans or preparing family members.

Most people developed their own expectations about the course of their MS. At diagnosis, these could be quite pessimistic but over time were revised by their own experiences and as they acquired more knowledge about the course of MS.

Several participants reported that they had had little opportunity to discuss their MS prognosis. Previous unsatisfactory discussions with health professionals, particularly at the time of diagnosis, left a long-lasting impression and coloured expectations about future discussions.

This study shows that there is wide variation in appetite for information about prognosis but the small number of people in the study meant it was not possible to link preferences to type of MS, time from diagnosis or other factors.

While prognostic tools continue to be developed and refined, it will be important to also consider how the information these tools provide is communicated. Given the long-lasting negative impact that poor communication can have, health professionals will need to take account of personal preferences and carefully consider whether, when and how to discuss prognosis information.


Background

The estimate of how a condition might affect you in the future is called prognosis. Each person's experience of MS is unique and no two people will have the same range and severity of symptoms. Symptoms often vary from day to day and year to year. This makes it very difficult to predict how a particular person will be affected in the short and long term.

At the same time, people with MS and clinicians are increasingly faced with making treatment decisions which involve taking personal prognosis into account when weighing up the benefits and risks of treatments. Clinical prognostic tools are being developed to help make more accurate predictions about how someone's MS might develop to support these treatment decisions. However, little is known about the acceptability or psychological and emotional impact of providing prognostic information to people with MS.

This study explored how people cope with the uncertainty of how MS might affect them in the future, whether they form their own expectations about the course of their MS, what they have been told and what they want to be told.

How this study was carried out

The researchers started out by inviting people with MS to participate in a study. From those who came forward, the researchers selected a small group of fifteen who were representative of the different types of MS, time from diagnosis, age and gender. Each of these selected participants was interviewed by telephone using a set of open-ended questions. Conversations were recorded and analysed.

What was found

Several common threads emerged from the conversations:

  • The experience of unsatisfactory discussions with health professionals, particularly at the time of diagnosis, had a long-lasting effect and coloured expectations about future discussions.
  • Most people recognised and accepted that MS is a variable condition with resulting uncertainty.
  • People often dealt with this uncertainty by trying to focus on the present rather than worry about the future. The researchers recognised that this strategy could conflict with the provision of prognosis information.
  • Despite recognising the uncertainty of MS, most people formed and revised their own expectations about the course of their MS. At diagnosis, these expectations could be quite pessimistic but over time were revised by their own experience of MS and other sources of information.
  • People were often unable to settle on a position about whether they wanted more insight into their likely long-term prognosis. The perceived usefulness of prognosis information appeared to be central to whether participants wanted to receive it.
  • Participants recognised that health professionals must make challenging judgements about what prognosis information to share, with whom and when. They also felt that MS nurses are well suited to discussing emotional and practical issues relating to MS.

What does it mean?

This study has provided insight into the ways people cope with the uncertainty of how their MS might develop and how they view the provision of information on prognosis. It highlights the long-lasting negative impact that poor communication between a health professional and someone with MS can have.

The study reveals that people are ambivalent about knowing how their MS might progress and tend to cope with uncertainty by focussing on the here-and-now rather than worrying about the future. There was a wide variation in appetite for information about prognosis but the small number of people in the study meant it was not possible to link preferences to type of MS, time from diagnosis or other factors which might influence this.

While clinical prognostic tools continue to be developed and refined, it will be important to also consider how the information these tools provide is communicated. Health professionals will need to take account of personal preferences and carefully consider whether, when and how to discuss prognosis information.

Dennison L, et al
How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study.
PLoS One. 2016 Jul 19;11(7):e0158982.
Abstract
Read the full text of this paper

More about prognosis

Multiple sclerosis is hugely variable. The type, duration, severity and impact of symptoms will vary from person to person. Some people go for long periods with few or no symptoms whilst others experience more frequent or persistent problems.

Prognostic tools are being developed which will allow for more accurate predictions about how someone's MS might develop. Data from a range of sources, such as placebo groups from clinical trials or MS registers, can be combined and analysed statistically to give more reliable predictions. Problems being faced with developing these tools include limitations of the measures used for MS activity, such as EDSS, currently in use and establishing the combinations of measures that are needed to give accurate personal prognosis.

More information about prognosis

Research by topic areas...

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Co-existing conditions

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Disease modifying drugs

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Muñoz MA, Kulick CG, Kortepeter CM, et al.
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Trojano M, Tintore M, Montalban X, et al.
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Sundgren M, Piehl F, Wahlin Å, et al.
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Mult Scler Relat Disord. 2016 Nov;10:204-212.
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Braune S, Lang M, Bergmann A; NeuroTransData Study Group..
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Drugs in development

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Brochet B, Deloire MS, Perez P, et al.
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Lasek-Bal A, Bartoszek K, Steposz A, et al.
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Sørensen PS, Sellebjerg F, Lycke J, et al.
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Economics

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Epidemiology

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Taylor BV.
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Other

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Baker D, Anandhakrishnan A, Tuite-Dalton KA, et al.
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Other treatments

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Etges T, Karolia K, Grint T, et al.
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Hosseinzadegan F, Radfar M, Shafiee-Kandjani AR, et al.
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Paediatric MS

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It feels like wearing a giant sandbag." Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis.
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Physical activity

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Psychological aspects

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Review

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Services

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Symptoms and symptom management

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Vitamin D

Laursen JH, Søndergaard HB, Sørensen PS, et al.
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Work

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J Rehabil Med. 2016 Oct 12;48(9):799-805.
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