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| MS in focus Issue
15
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2010
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Roberta Motta, Clinical Nurse Coordinator, Italian MS Society Rehabilitation Centre, Genoa, Italy |
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For many people with MS, the nurse may be the first point of contact for talking about CAM. This is particularly true in settings where the MS nurse has the opportunity to establish a relationship based on mutual respect and openness. In this type of setting, the person with MS will feel free to discuss CAM without the fear of being judged. Fear of being judged prevents many people with MS from being open with healthcare professionals, particularly if the CAM is controversial.
It is important that questions about CAM use are part of every visit. The nurse can set the example of the importance of discussing CAM in the healthcare setting by making it part of the routine consultation, along with current medications and symptoms.
If the individual expresses interest in a particular CAM, but has not yet tried it, the nurse has an important role in helping evaluate the CAM. There are several aspects that should be discussed, including the following:
- Who is proposing the treatment? If it is an individual, does this person have specific knowledge and verifiable credentials in the field related to the CAM being proposed? Does the person know anything about MS? Does this person gain financially from promoting the treatment? If it is a company, does the company have experience in MS?
- What is the rationale behind the treatment? Is it based on sound scientific concepts?
- Has it been tested in MS? Is there any proof that it is effective? People should be warned about treatments that are promoted based solely on anecdotal stories.
- What does the treatment entail and how long should it be maintained?
- What are the risks and side effects of the treatment?
- What are the contraindications of the treatment in relation to other “conventional” therapy the person is currently following?
- How much does the treatment cost?
If the person discloses that he or she is currently using a CAM, the nurse should try to understand what effect it could have on MS. In order to do this, it is important to search for information on reliable websites or publications and to talk to other members of the healthcare team who may be knowledgeable about CAM. It may not be possible to discuss and evaluate the CAM immediately, particularly if the nurse is not familiar with a particular treatment – in this case it can be helpful to schedule another appointment, to allow the nurse time to gather information.
If the person with MS discloses that they have replaced a conventional therapy or treatment prescribed by the neurologist or other healthcare professional with a CAM, it is important that the nurse clearly explains the possible consequences. For example, discontinuing an immunomodulatory therapy may result in an increased risk of relapse. The time necessary to re-establish the full therapeutic effect, once the medication is resumed, can be weeks, months or even longer. Further, some CAM, as explained in this issue of MS in focus, have a stimulating effect on the immune system. While for some diseases or problems immune system stimulation might seem appropriate, for MS the consequences could be potentially damaging. Some other characteristic features of MS, such as heat sensitivity or spasticity, make some CAM unsafe.
Often people with MS who have tried a CAM claim that their MS improved due to the treatment. The nurse should reiterate that MS is an unpredictable disease characterised by relapses and remissions. For some CAM success stories, there is no way to prove that was indeed the improvement due to CAM and not due to the spontaneous changes that characterise MS.
Some CAM have been reported to show benefit in people with MS, even though most have not been tested using the same type of rigorous studies that are required of conventional therapies. Anecdotal reports and media publicity create expectations and often raise false hope. A complete evaluation of a CAM, which involves the healthcare team supporting the person in understanding possible risks and benefits, will help in making an informed decision.
Above all, the nurse will want to maintain a supportive relationship with the individual even if mutual agreement is not possible.
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| Some general recommendations for people with MS considering a CAM:
- Discuss the CAM with your MS nurse or neurologist before trying anything new; share with them any information you find on the CAM you are interested in.
- Do not discontinue/substitute any medication without consulting your MS nurse or neurologist.
- Be suspicious of “secret formulas” often publicised in the media.
- If you have any concerns about the CAM, you could request that the promoter of the CAM be contacted by your MS nurse or neurologist for more information.
- If you decide to try a CAM, keep your neurologist and MS nurse updated.
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