Author Topic: (Abst.) MS patients' understanding and preferences for risks and benefits of DMDs  (Read 95 times)

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Offline agate

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I fully expected this to say that people with MS overestimate the risks involved in the DMDs but it says we underestimate them. ...

From PubMed, March 23, 2017:

Quote
J Neurol Sci. 2017 Apr 15;375:107-122.

Multiple sclerosis patients' understanding and preferences for risks and benefits of disease-modifying drugs: A systematic review

Reen GK1, Silber E2, Langdon DW3.

Author information

1
Department of Psychology, Royal Holloway, University of London, Egham, UK. Electronic address: Gurpreet.reen.2014@live.rhul.ac.uk.
2
Department of Neurology, King's College Hospital NHS Foundation Trust, Denmark Hill, London, UK. Electronic address: eli.silber@nhs.net.
3
Department of Psychology, Royal Holloway, University of London, Egham, UK. Electronic address: d.langdon@rhul.ac.uk.


BACKGROUND:

Multiple sclerosis (MS) patients are faced with complex risk-benefit profiles of disease-modifying drugs (DMDs) when making treatment decisions. For effective shared decision-making, MS patients should understand the risks and benefits of DMDs and make treatment decisions based on personal preferences.

METHODS:

This is an inclusive systematic review to primarily assess current understanding of MS patients for information about DMDs provided during the standard healthcare system. The secondary aim assesses MS patients' preferences for specific risks and benefits of treatments. A systematic search was conducted using PubMed, Embase and Google Scholar. A total of 22 studies were reviewed across both aims. Relevant quantitative and qualitative data was extracted by two authors. A narrative synthesis was conducted due to heterogeneity of research findings.

RESULTS:

There was a trend for DMD risks to be generally underestimated and DMD benefits to be generally overestimated by MS patients. Treatments that could potentially offer substantial symptom improvement, delay in disease progression, or reduction in relapses were preferred even at the expense of higher risks.

CONCLUSIONS:

Many patients' experience of information during the standard healthcare system does not provide satisfactory understanding of the risks and benefits of DMDs. Effective ways to communicate risk and benefit DMD information when making shared treatment decisions needs to be identified. Patient preferences of DMD risks and benefits should also be taken into account.

https://www.ncbi.nlm.nih.gov/pubmed/28320112
MS Speaks--online for 17 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010. Glatopa (glatiramer acetate 40mg 3 times/week) since 12/16/20.

Offline ssalimi

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I agree we underestimate. All the drugs are doing are working around the problem. They know something is wrong with the immune system so they are simply modulating or suppressing it as much as possible. These carry serious short-term risks such as infections and longer-term risks such as secondary-autoimmunity and malignancies. I believe that in 5-10 years we will see a lot more malignancies developed on Alemtuzumab/Ocrelizumab.

Offline agate

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I'm not sure they  know enough about the immune system yet to be tinkering with it to the extent that drugs that modify the immune system are being offered, but maybe something is better than nothing when it's MS because for so long there was nothing.
MS Speaks--online for 17 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010. Glatopa (glatiramer acetate 40mg 3 times/week) since 12/16/20.

 

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