Giovannoni & Rhoades. Individualizing treatment goals and interventions for people with MS. Curr Opin Neurol. 2012 Feb;25 Suppl:S20-7.
RECENT FINDINGS: The model for decision making in the management of MS’ers as well as other chronic diseases has evolved from one in which medication is prescribed by the neurologist and the person is expected to comply with treatment, to one in which the neurologist and individual with MS achieve concordance with respect to both the expectations and goals of therapy and the means to achieve them. This shift has resulted in a requirement for easily understood evidence-based information about the risks and benefits of different treatment alternatives. It has been demonstrated that providing MS sufferers with such information increases effective self-management and satisfaction.
BACKGROUND: The aim of this article is to consider factors that should be evaluated in the selection of therapy for people with multiple sclerosis (MS). This includes current approaches to treatment selection and how to align this process with MS’ers treatment goals. These issues have increased in importance with the availability of new disease-modifying therapies and will continue to do so as more novel treatments are approved.
RECENT FINDINGS: The model for decision making in the management of MS’ers as well as other chronic diseases has evolved from one in which medication is prescribed by the neurologist and the person is expected to comply with treatment, to one in which the neurologist and individual with MS achieve concordance with respect to both the expectations and goals of therapy and the means to achieve them. This shift has resulted in a requirement for easily understood evidence-based information about the risks and benefits of different treatment alternatives. It has been demonstrated that providing MS sufferers with such information increases effective self-management and satisfaction.
SUMMARY: Healthcare providers involved in the treatment of MS have an increased responsibility to ensure people with this disease, their partners, and when appropriate, their families are involved in all decisions regarding care. This includes helping to select and adjust therapy on the basis of the individual MS sufferer’s characteristics and needs that are likely to evolve as the disease progresses.
“I am often criticised by colleagues for shirking my responsibility by expecting people with MS to make decisions about which treatment they want to go onto. What do you think?”
“I will do a more detailed posting on the shift that has occurred from a compliance (clinician-focused) to a concordance (patient-focused) model.”
CoI: I co-wrote this article
I very much believe that gone are the days when a doctor or consultant can just hand a patient a drug and they just take it, no questions asked. In this age of information, patients are much better informed and, from my experience, many MS'ers actually want to have a say in how their disease is managed. I personally get really annoyed when there is no two-way dialogue between patients and their healthcare providers. I firmly believe that the buck stops with the patient – they always have a choice as to whether or not they take their consultant's advice. At the end of the day, MS is currently a life-long condition and patients who take an interest in their disease management should be guided and supported in doing so.
Some patients may not be happy. It's an attitude I don't understand but I have heard patients & caregivers say things like "Ignorance is bliss" and (on converting to progressive) "I'm so glad Dr ____ never let me have the least idea this could happen."People like that are not going to be reading your blog.I think patients have to share responsibility for choosing a treatment. That is why we have to sign consent forms
I agree with the comments left so far. But I'd like to add that I REALLY don't like the term 'sufferers' – somehow dehumanises the situation. Or maybe I'm just grumpy?On second thoughts, don't answer that.
Re: "I REALLY don't like the term 'sufferers'."MS'ers is actually short for MS sufferers. Other terms are patients, clients or people with MS (PwMS). I used to use the latter, but the Shift.MS team convinced me to start using the term MS'er. What do you think?
Now that I know what MSer sands for I dont like it. PwMS or MSPs (MS people) is better
I AGREE!
I didn't realise it meant sufferers either- I thought it meant multiple sclerosiser's- not good English I know, but like people who drive are drivers, who farm are farmers, who have MS are MSer's.
Hmm – I used to like the term MS'ers as, like the others above, I thought of it more as one who "did" MS in the same way as farmers farm.Now I hate it as I would NEVER refer to myself as a MS sufferer
Re “the Shift.MS team convinced me to start using the term MS'er. What do you think?”Don’t those guys on Shift.ms say MSers, without the apostrophe?
MSers……I thought it was someone with MS