MS in the Digital Age: Doctor as a Lifebuoy in the Sea of Information

A New Type of Patient in a New Era

The Internet, search engines, social networks connecting patients worldwide, and not least artificial intelligence, or rather digital tools based on machine learning, which have become newly accessible to the general population. An ocean of information. And on the other hand, a patient with multiple sclerosis, typically starting in early adulthood, meaning a person who usually masters these technologies. Coming to the doctor armed with, sometimes valid, other times misleading or downright erroneous information. In other words, a different patient than those previous generations of doctors were used to. How to deal with this situation? What are its pitfalls? And why is communication so important?

Diagnostic Phase

In the diagnostic phase, the patient is very vulnerable, with uncertainty playing a crucial role. They tend to seek additional opinions and information and may go through phases of shock and denial, striving to rule out a chronic disease diagnosis. The first contacts with the doctor are therefore very important, especially from a communication perspective – both in terms of providing information and listening and making an effort to achieve mutual understanding. The mentioned publication offers several tips on how to proceed in this situation:

1. Think about body language. Do not forget about eye contact and gestures. Pausing the writing of the medical report is a significant investment in the mutual relationship.
2. Of course, certain corrections are needed for efficiency, but the patient must not be frustrated by constant interruptions.
3. When delivering bad news, it is good to choose a gradual approach. A new diagnosis significantly impacts the patient's life, and only essential information should be highlighted. There is still time for the rest. The Internet offers an abundance of data; the doctor's task is to select the relevant and substantiated ones for the patient at that moment. It is also advantageous to bring a close person for the consultation.
4. Do not forget about empathy.
5. Be realistic, but do not take away the patient's hope.
6. Encourage the patient to note down their questions for the next visit so that you can provide answers. This way, they are not dependent on unverified rumors.

Transitional Phase

In the subsequent phase, the patient has probably gathered a relatively large amount of information from various sources. The doctor's task is to confirm relevant information with sufficient certainty and refute others. During the second and several other visits, the foundations of a long-term relationship are also built. The publication offers several interesting tips here as well:

1. Do not focus only on the patient, but also on their close surroundings. Some social and health impacts and needs are much more realized by family members than by the patient.
2. There should be a return to the previous visit, clarification of questions that may have arisen in the meantime, and a brief check on how the patient understood the previous information.
3. It is important to set a plan. It should align the expectations of the patient and the doctor and then, in mutual agreement, establish a procedure. This prevents disappointment and increases compliance. This involves including the patient in the decision-making process and providing sufficient space for the patient to discuss crucial decisions (e.g., starting new treatment) with their close ones.

Long-term Monitoring

Multiple sclerosis is a chronic disease, and given its frequent onset in early adulthood, patients are often monitored in MS centers for decades. During this period, several crucial moments arise that need to be addressed:

1. The patient should understand the real goals of the treatment. It is essential to outline the possibilities that the drug offers to prevent disappointment and non-compliance.
2. A study analyzing data from over 3,000 patients found that mainly women aged 18–40 with a bachelor's degree or higher education and relatively higher incomes tended to seek alternative medicine methods. The doctor should therefore be prepared for questions about alternative therapy options and discuss this issue with the patient calmly, comprehensively, and without judgment.
3. The first major relapse is a significant challenge. It is crucial not to forget the psychological impact of the attack and to maintain the patient's trust in this emotionally and socially difficult situation.
4. And last but not least, let's not forget that we too possess the capabilities of the modern digital world. Offer the patient relevant websites where they can gather information. Connect with them electronically, enabling them to communicate remotely within set limits. Not all problems require physical contact in crowded clinics. But remember, the converse is also true – not everything can be solved electronically.

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Source: Alroughani R. A. Improving communication with multiple sclerosis patients. Neurosciences (Riyadh) 2015; 20 (2): 95−97, doi: 10.17712/nsj.2015.2.20140441.