The opinion of patients with multiple sclerosis is key to designing a tool that helps shared decision-making

A study, led by Vall d'Hebron, identifies what type of information patients need to develop a web platform that will be useful to them when involving- se in making decisions about their treatment.


Today, several drugs are available to treat relapsing-remitting multiple sclerosis. However, patients often have difficulty finding reliable, quality and up-to-date information that allows them to participate in the decision-making process on the therapeutic strategy to follow. "At the consultation, we notice that the patient wants to get involved, more and more, in their health care", explains Miguel Ángel Robles-Sánchez, Clinical nurse and Nursing Coordinator at Cemcat and researcher of the Multidisciplinary Nursing Research Group at VHIR. "In other countries, programs have been developed where in a telematic environment, the patient can consult all the data necessary to make a joint decision with the health professionals".

Robles-Sánchez is the first author of a study, published in the Journal of Neuroscience Nursing, which lays the groundwork for designing a similar tool for patients in Catalonia and Spain. "The first step was to identify their needs, so that the resource would be useful for them in making decisions. So, we recruited 27 patients, mostly women with an average age of 48.6 years and with relapsing-remitting multiple sclerosis diagnosed more than 10 years ago, whom we distributed into four work groups to carry out the interviews", declares the researcher.

According to the results, it is very important for patients to know what clinical options are available, what they are like, the route and frequency of administration, the effectiveness or the side effects, before making a decision. In addition, this information must be accessible and use a language understandable to them. "For example, when we talk about the effectiveness of a treatment, we need to use concepts that are familiar to them and that they understand, such as the number of outbreaks. How many outbreaks they will have in a year if they are administered one treatment or the other or how many outbreaks will stop them are terms that give them much more information than a percentage", says Robles-Sánchez. "With the right knowledge, we see that even patients, who normally do not take an active role in decision-making in the consultation, get involved and improve their participation."

Another problem that patients face is the large amount of information available. "The Internet is one of the main sources of inquiry. They visit websites, blogs, social networks..., but they don't have the tools to know if what they read is rigorous, unbiased, independent and reliable", reports the researcher. "For this reason, together with the Health Quality and Assessment 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 decision tool shared, SeleccionEM. We are currently working with many centers in Catalonia to update this website. We want to offer patients a space where they can search, consult, research and compare, without rushing, from their homes, and if they wish accompanied by family members or people they trust", he concludes.

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