You are here:

MS research update - Options for your treatment: who makes the decisions? - 10 July 2013

Summary

Increasingly people are becoming actively involved in deciding which treatment options will be best for them rather than leaving a health professional to decide for them. This way of working together is called shared decision making.

This study took the most frequently used scale for measuring involvement in decision making, the Control Preference Scale (CPS), and adapted it into an electronic version (eCPS), which the person could complete themselves. It included new cartoons which the researchers thought might explain the options better.

They found that the new electronic "cards", were well accepted, easy to understand and worked as well as the established (non-electronic) version of the test.

Background

Increasingly people are becoming actively involved in deciding which treatment options will be best for them rather than leaving a health professional to decide for them. This way of working together is called shared decision making.

Although a good idea in principle, there is not always time during a consultation with a health professional to have an in depth discussion. Also, it can be difficult for a health professional to judge how active a role someone would like to take and, therefore, how to pitch the discussion.

How this study was carried out

This study took the most frequently used scale for measuring involvement in decision making, the Control Preference Scale (CPS), and adapted it. It had originally been a questionnaire delivered face to face by the health professional. The researchers transformed it into an electronic version (eCPS), which the person could complete themselves, and included new cartoons which they thought might help explain the options better.

A pilot test was completed by 26 Italian and German people with MS. In addition, the new version was tested against the old version in 92 people who received both versions in random order.

You can see the five electronic "cards", including the cartoons, or find them in Figure 1 of the full text of this paper.

The options on the cards were:

  1. I prefer to make the final selection about which treatment I will receive
  2. I prefer to make the final selection of my treatment after seriously considering my doctor's opinion
  3. I prefer that my doctor and I share responsibility for deciding which treatment is best for me
  4. I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my opinion
  5. I prefer to leave all decisions regarding my treatment to my doctor.

The full text of this paper explains the details of how the questionnaire is administered and scored.

What was found

They found that the new electronic "cards", containing the cartoons, were well accepted and easy to understand. People reported that they took the text into account more than the cartoons. The new version of the test seemed to be as reliable as the older, face to face, version.

People with higher education levels generally preferred to play a more active role in the decisions about their treatment but this was not a very strong correlation. Similarly, the Germans enrolled in the study generally preferred to play a more active role in decision making than the Italians in the study.

What does it mean?

The authors concluded that the new electronic version of the Control Preference Scale (CPS) worked well and that people from different cultural backgrounds could be different in how actively or passively they approached decisions about treatment.

Solari A, Giordano A, Kasper J, et al.
Role preferences of people with multiple sclerosis: image-revised, computerized self-administered version of the control preference scale..
PLoS One. 2013 Jun 18;8(6):e66127.
abstract
Read the full text of this paper

More about shared decision making

A health professional may be an expert on MS but a person with MS is the expert on their own MS and how it affects their life. This emphasises the importance for someone with MS getting good information about a treatment, being supported to use the information and then making the best decision possible at that time.

There was an NHS campaign, launched in 2012, which recommended three questions to ask your doctor or MS nurse to help you make choices and give you more say in your own healthcare:

  1. What are my options?
  2. What are the pros and cons of each option?
  3. How do I get support to help me make a decision that is right for me?

There are a number of other resources to help you consider the sort of questions you may want to ask and the information you may need when consulting a health professional.

Research by topic areas...

Diagnosis

Tur C, Montalban X.
Possible new modifications for the McDonald 2010 criteria for the diagnosis of primary progressive multiple sclerosis.
Mult Scler. 2013 Jul;19(8):993-4.
abstract

Symptoms and symptom management

Arroyo R, Massana M, Vila C.
Correlation between spasticity and quality of life in patients with multiple sclerosis: the CANDLE study.
Int J Neurosci. 2013 Jul 2. [Epub ahead of print]
abstract

Disease modifying treatments

Lugaresi A, di Ioia M, Travaglini D, et al.
Risk-benefit considerations in the treatment of relapsing-remitting multiple sclerosis.
Neuropsychiatr Dis Treat. 2013;9:893-914. doi: 10.2147/NDT.S45144. Epub 2013 Jun 24.
abstract

Parfenov V, Schluep M, Du Pasquier R.
Assessing risks of multiple sclerosis therapies.
J Neurol Sci. 2013 Jul 5. doi:pii: S0022-510X(13)00275-X. 10.1016/j.jns.2013.06.013. [Epub ahead of print]
abstract

van Rossum JA, Vennegoor A, Balk L, et al.
Safety, anxiety and natalizumab continuation in JC virus-seropositive MS patients.
Mult Scler. 2013 Jul 4. [Epub ahead of print]
abstract

Tabrizi N, Etemadifar M, Ashtari F, et al.
Combination therapy with mitoxantrone and plasma exchange in aggressive relapsing remitting multiple sclerosis: A preliminary clinical study.
J Res Med Sci. 2012 Sep;17(9):828-33
abstract
Read the full text of this paper

Epidemiology

Scalfari A, Knappertz V, Cutter G, et al.
Mortality in patients with multiple sclerosis.
Neurology. 2013 Jul 9;81(2):184-192.
abstract

Donatone B.
Focused suggestion with somatic anchoring technique: rapid self-hypnosis for pain management.
Am J Clin Hypn. 2013 Apr;55(4):325-42.
abstract

Rehabilitation

Hilfiker R, Vaney C, Gattlen B, et al.
Local dynamic stability as a responsive index for the evaluation of rehabilitation effect on fall risk in patients with multiple sclerosis: a longitudinal study.
BMC Res Notes. 2013 Jul 9;6(1):260. [Epub ahead of print]
abstract

Assessment tools

Blanco R, Pérez-Rico C, Puertas-Muñoz I, et al.
Functional assessment of the visual pathway with multifocal visual evoked potentials, and their relationship with disability in patients with multiple sclerosis.
Mult Scler. 2013 Jul 4. [Epub ahead of print]
abstract

Stallinga HA, Roodbol PF, Annema C, et al.
Functioning assessment vs. conventional medical assessment: a comparative study on health professionals' clinical decision-making and the fit with patient's own perspective of health.
J Clin Nurs. 2013 Jul 2. doi: 10.1111/jocn.12266. [Epub ahead of print]
abstract

Vitamin D

Martinelli V, Dalla Costa G, Colombo B, et al.
Vitamin D levels and risk of multiple sclerosis in patients with clinically isolated syndromes.
Mult Scler. 2013 Jul 8. [Epub ahead of print]
abstract

Disanto G, Handel AE, Damoiseaux J, et al.
Vitamin D supplementation and antibodies against the Epstein-Barr virus in multiple sclerosis patients.
Mult Scler. 2013 Jul 4. [Epub ahead of print]
abstract

Paediatric MS

Hummel HM, Brück W, Dreha-Kulaczewski S, et al.
Pediatric onset multiple sclerosis: McDonald criteria 2010 and the contribution of spinal cord MRI.
Mult Scler. 2013 Jul 4. [Epub ahead of print]
abstract

Psychological aspects

Humphreys I, Drummond AE, Phillips C, et al.
Cost-effectiveness of an adjustment group for people with multiple sclerosis and low mood: a randomized trial.
Clin Rehabil. 2013 Jul 8. [Epub ahead of print]
abstract

Deluca J, Leavitt VM, Chiaravalloti N, et al.
Memory impairment in multiple sclerosis is due to a core deficit in initial learning.
J Neurol. 2013 Jul 6. [Epub ahead of print]
abstract

Mikula P, Nagyova I, Krokavcova M, et al.
Coping and its importance for quality of life in patients with multiple sclerosis.
Disabil Rehabil. 2013 Jul 4. [Epub ahead of print]
abstract

Brissart H, Morele E, Baumann C, et al.
Cognitive impairment among different clinical courses of multiple sclerosis.
Neurol Res. 2013 Jun 19. [Epub ahead of print]
abstract

Prognosis

Bove R, Musallam A, Healy BC, et al.
No sex-specific difference in disease trajectory in multiple sclerosis patients before and after age 50.
BMC Neurol. 2013 Jul 3;13(1):73. [Epub ahead of print]
abstract
Read the full text of this paper

CCSVI

Mazanderani F, O'Neill B, Powell J.
"People power" or "pester power"? YouTube as a forum for the generation of evidence and patient advocacy.
Patient Educ Couns. 2013 Jul 2. doi:pii: S0738-3991(13)00231-0. 10.1016/j.pec.2013.06.006.[Epub ahead of print]
abstract

Valdueza JM, Doepp F, Schreiber SJ, et al.
What went wrong? The flawed concept of cerebrospinal venous insufficiency.
J Cereb Blood Flow Metab. 2013 May;33(5):657-68. doi: 10.1038/jcbfm.2013.31. Epub 2013 Feb 27.
abstract
Read the full text of this paper

Other

Normann B, Sørgaard KW, Salvesen R, et al.
Clinical guidance of community physiotherapists regarding people with MS: professional development and continuity of care.
Physiother Res Int. 2013 Jul 1. doi: 10.1002/pri.1557. [Epub ahead of print]
abstract

Year: 2016

December 2016

November 2016

July 2016

May 2016

April 2016

March 2016

February 2016

January 2016

Year: 2015

December 2015

November 2015

October 2015

May 2015

April 2015

March 2015

February 2015

January 2015

Year: 2014

December 2014

November 2014

October 2014

September 2014

August 2014

July 2014

June 2014

May 2014

April 2014

March 2014

February 2014

January 2014

Year: 2013

December 2013

November 2013

October 2013

September 2013

August 2013

July 2013

June 2013

May 2013

April 2013

March 2013

February 2013

January 2013

Year: 2012

December 2012

November 2012

October 2012

September 2012

August 2012

July 2012

June 2012

May 2012

April 2012

March 2012

February 2012

January 2012

Print this page