Understanding treatment decisions from the perspective of people with relapsing remitting multiple Sclerosis: A critical interpretive synthesis.Mult Scler Relat Disord. 2018 Nov 17;27:370-377. doi: 10.1016/j.msard.2018.11.016.
BACKGROUND: Multiple Sclerosis (MS) is a chronic inflammatory demyelinating disorder of the central nervous system that mainly affects young adults. While there is no cure for MS, disease modifying treatments (DMTs) reduce the relapse rate and partial accrual of disability. More effective DMTs may have higher risks including life-threatening infections or secondary autoimmunity. The complexity and novelty of available treatments cause challenges for clinicians when prescribing treatments and for people with MS (PwMS) when deciding what trade-offs they are willing and ready to make.
OBJECTIVE: To explore the experience of people with relapsing remitting MS (PwRRMS) and their perspectives in choosing treatments.
METHODS: Critical interpretive synthesis was employed to review and synthesis the published literature. Eighty-three publications were selected in a multi-step systematic process.
RESULTS: Findings are presented in four interrelated areas: the influence of the clinical evidence-base in decision making; the meaning of DMT efficacy for PwRRMS; the influence of models of decision-making and information acquisition practices in PwRRMS; and the importance of psychosocial dimensions in DMT decision making. Synthesis of the findings revealed that alongside medical and individual reasoning, contextual circumstances play an important role in making treatment decisions.
CONCLUSION: This review identifies and explains the importance of diverse contextual circumstances (clinical, social, psychological) that are important for PwRRMS when making treatment decisions. The findings demonstrate the importance of eliciting, understanding and addressing such contextual factors.
I am from Yorkshire and must speak a different form of English as I just have no clue what this abstract really means. I disagree with the tennet that there is no cure, because if people are disease free as some people have been with the immune reconstitution therapies then maybe the c-word is here. Time will tell.
However, in making decisions on glatiramer acetate it must be limited side effects and perhaps lazy neurologists who don’t want to do any monitoring that are all important. Otherwise the glateriods would not be the number one best seller.
It can’t be based on efficacy, as they are probably the least efficacious group of treatments.
It can’t be because of convenience as you have to inject every day
It can’t be based on logic and mechanism as these were designed on a (in my opinion) false idea that myelin basic protein is the autoantigenic cause of MS, using data of dubious translational value, where it only really works well in animals when you mix the stuff with the adjuvants used to induce disease.
The regulators says “The mechanism(s) by which glatiramer acetate exerts its effects in patients with MS is (are) not fully elucidated. However, it is thought to act by modifying immune processes that are currently believed to be responsible for the pathogenesis of MS”
Is this why GA has a “mechanism a month” ?
Because as each new mechanism comes along GA has to work via it.