Today is the 14th World Multiple Sclerosis Day. There are currently more than 30,000 multiple sclerosis patients in our country, most of them are between the ages of 20 and 40. They are at a critical moment in life, but because of the disease, they are like angels with broken wings. Each acute attack will lead to further deterioration of the disease and can easily lead to disability. How to reduce the risk of recurrence, improve the quality of life, and help patients return to a normal life? Experts emphasize that disease-modifying therapy and full-course management during remission are particularly critical.
Multiple sclerosis (MS) is a rare disease characterized by inflammatory demyelinating lesions of the central nervous system. It is also one of the most common disabling neurological diseases in young adults in the world.
Since early symptoms are easily overlooked, coupled with different clinical manifestations, complex symptoms, and easy confusion with other diseases, multiple sclerosis is easily missed and misdiagnosed. The “Blue Book on Health Insights of Chinese Multiple Sclerosis Patients and 2021 Edition of Chinese Multiple Sclerosis Patients Quality of Life Report” shows that the average time from the first onset of the disease to the doctor’s visit is more than one year, and the average time from the doctor’s visit to the diagnosis is more than two years. Lost the best time for treatment.
Professor Xu Yan, chief physician of the Department of Neurology of Peking Union Medical College Hospital and deputy head of the Neuroimmunology Group of the Neurology Branch of the Chinese Medical Association, reminded that when blurred vision, visual field defects, weakness and numbness of limbs, or persistent If you experience symptoms such as fatigue and ataxia, you should see a neurology doctor as soon as possible. Of course, it does not mean that with these symptoms, it is necessarily multiple sclerosis. For example, sometimes vision loss may be due to visual fatigue.
What should I do after being diagnosed with multiple sclerosis? According to Prof. Xu Yan, the treatment of multiple sclerosis mainly includes two phases: acute phase and remission phase, of which remission phase is an ideal time window for controlling disease progression. At present, modified therapy (DMT) is the standard treatment in remission period recommended by domestic and foreign treatment guidelines and expert consensus, which helps to reduce and alleviate the frequency and severity of relapse.
The phased results of the “Multiple Sclerosis Doctor-patient Treatment Preference Survey” disclosed this time also show that patients are concerned about the efficacy and safety of DMT drugs.
Initiated by the China Rare Disease Alliance and supported by Sanofi China, the survey was launched in December last year. The sample covers 199 patients with multiple sclerosis. The complete survey results are expected to be announced in August this year. Through discrete choice experiments, this survey explored the preference of Chinese multiple sclerosis patients for DMT drug selection in five dimensions: administration method, years of delayed disability progression, number of relapses within ten years, degree of side effects, and monthly out-of-pocket costs.
The preliminary results of the first phase of the survey showed that among the factors affecting the choice of patients’ treatment options, the efficacy and safety of drugs in controlling disability progression were the two key factors, accounting for 33.25% and 30.33%, respectively.
Professor Xu Yan said: “For a long time in the past, patients with multiple sclerosis had no international standard disease-modifying treatment options available, and many clinicians had to use low-dose hormones and traditional immunosuppressants for treatment. None of them can control the disease progression for a long time, and there are safety risks. In recent years, a number of DMT drugs have entered the national medical insurance, including innovative oral drugs that can reduce the annual recurrence rate by about 71%. It has good safety and greatly improves patient compliance.”
Faced with the complexity of multiple sclerosis, digital technology has become a new means to better manage the disease. In order to help patients develop the habit of keeping a disease diary, and at the same time allow doctors to have a more comprehensive and accurate grasp of the patient’s disease status, the “Multiple Sclerosis Patient Diary” created by Sanofi China and the China Medical and Health Culture Association came into being. Launched on Multiple Sclerosis Day.
Professor Xu Yan said that this patient diary is a disease management tool tailored for Chinese patients with multiple sclerosis. There are two kinds of small programs and paper versions, which can meet the different needs of patient groups and help patients manage their diseases in a scientific and standardized manner.
Author: Tang Wenjia
Editor: Tang Wenjia
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Responsible editor: Fan Liping
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