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May 30 is World MS Day. The MS community worldwide will share stories and raise awareness with all those affected by Multiple Sclerosis (MS) through campaigns and other activities. The theme for World MS Day 2020–23 is “Connections.” The goal is to build connections with communities and to quality care.
On this “World MS Day,” CareNet surveyed 100 physicians involved in MS care, mainly in the field of “neurology” among its members, regarding “the relationship between MS patients and their doctors.” The results revealed the following points.
・In the “When should healthcare professionals and society be there for MS patients?” category, “pregnancy, childbirth (patient becoming a parent)” (32%) and “employment/work” (18%) accounted for 50% of the responses. However, the most common response was “all regardless of ages (care for young adults when the disease occurs in childhood to adolescence, employment/work, marriage/married life, pregnancy, childbirth (patient becoming a parent), and middle to old age care)” with 38%.
・The most common “What physicians find to be the biggest hurdle in gaining the understanding of MS patients at the time of definitive diagnosis” was “disease-related information(disease type, cause of onset, symptoms, remission and relapse, course, etc.)” at 37%, followed by “treatment methods and rehabilitation” at 27%.
・In “What MS patients consult with their physician about most,” 48% of the respondents chose “treatment-related issues (treatment options, objectives, effects, side effects, etc.),” but 47% also asked about symptoms and daily life issues other than treatment.
When asked “At what point in an MS patient’s life (life stage) do you think is the right time for healthcare professionals and society to be there for them while giving special careful consideration to the fact that they have MS?,” the answer to this question was “pregnancy, childbirth (patient becoming a parent)” at 32% and “employment/work” at 18%, with life events in adulthood and beyond accounting for 50% of the responses.
The most common response, however, was “all regardless of ages (care for young adults when the disease occurs in childhood to adolescence, employment/work, marriage/married life, pregnancy, childbirth (patient becoming a parent), and middle to old age care)” at 38%.
These results highlight the fact that many physicians involved in MS treatment want to be a part of the patient’s life itself and want society to have a better understanding of MS patients.
When asked “What physicians find to be the biggest hurdle in gaining the understanding of MS patients when explaining the diagnosis of MS to them,” the most common response, at 37%, was “disease-related information (disease type, cause of onset, symptoms, remission and relapse, course, etc.)”.
This was followed by “treatment methods and rehabilitation” (27%) and “reasons for treatment” (15%).
As the name suggests, MS is a neurological disease with symptoms that vary from patient to patient and occur in many different areas, so the results suggest that it is difficult for patients with a confirmed diagnosis to easily understand the disease.
Finally, regarding “What MS patients consult with their physician about most in the course of implementing MS treatment,” the most common response, at 48%, was “treatment-related issues (treatment options, objectives, effects, side effects, etc.)”.
However, 47% of the respondents consulted on issues other than treatment, such as “matters related to communication from the patient to health care professionals, such as an explanation of symptoms, degree of symptoms, and changes” (21%), “matters related to explanation and understanding of the patient’s surroundings” (11%), and “matters related to daily life, such as schoolwork, work, exercise, and travel” (11%).
These results reveal that the relationship between MS patients and their doctors is not necessarily limited to treatment alone, with consultations being sought on various aspects of daily life.
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