2023-11-12 10:50:00
There is currently a notable therapeutic arsenal available to combat relapsing-remitting multiple sclerosissomething positive that, however, frequently causes patients to have difficulties finding reliable, quality and updated information, which allows them to participate in the decision process on the therapeutic strategy to follow.
“In the consultation, we observe that the patient wants to be involved, more and more, in their health care,” he explains. Miguel Ángel Robles-SanchezClinical nurse and Nursing Coordinator at Cemcat and researcher at VHIR Multidisciplinary Nursing Research Group. “In other countries, programs have been developed where, in a telematic environment, the patient can consult all the necessary data to make a joint decision with health professionals.”
Robles-Sánchez signs a study as first author ‘Views of Multiple Sclerosis Patients About Key Elements for a Decision Aid‘, published in the magazine Journal of Neuroscience Nursingwhich lays the foundation for designing a similar tool for patients of Cataloniaand of Spain.
“The first step was to identify their needs, so that the resource would be useful to them in decision-making. Thus, we recruited 27 patients, mostly women with a mean age of 48.6 years and with relapsing-remitting multiple sclerosis diagnosed more than 10 years ago, which we distributed into four work groups to carry out the interviews,” declares the researcher.
According to the results, before making a decision, it is very important for patients to know:
that clinical options are available how are they what is the route and frequency of administration
the effectiveness
los side effects
Furthermore, this Information must be accessible and use understandable language for them. “For example, when we talk regarding the effectiveness of a treatment, it is necessary to use concepts that are familiar and understand, such as number of shoots. “How many outbreaks they will have in a year if they are given one treatment or another or how many outbreaks it will stop are terms that give them much more information than a percentage,” he points out. Robles-Sanchez. “With the right knowledge, we see that even patients, who normally do not take an active role in decision-making in the consultation, they get involved and improve their participation“.
Patients and available information
Another problem that patients face is large amount of information available. “The Internet is one of the main sources of consultation. They visit websites, blogs, social networks…, but they do not have tools to know if what they read is rigorous, without bias, independent and reliable,” says the researcher. “For this reason, together with the Health Quality and Evaluation Agency (AQUAS)the University of Girona and the Multiple Sclerosis Foundation (FEM)Once the study was completed, we developed a first pilot version of the shared decision tool, Select ME. Currently, we work with many centers in Catalonia to update this website. We want to offer patients a space in which search, consult, investigate and comparewithout rushing, from home, and if they wish, accompanied by family or people they trust,” he concludes.
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