World Lupus Day ⑤ | "2021 National Systemic Lupus Erythematosus Survival Development Report" was officially released, exploring the current status of rehabilitation management of SLE patients throughout the course of the disease

On May 10, 2021, under the guidance of the National Clinical Medical Research Center for Skin and Immune Diseases, Mijian and the "Physician Daily" jointly initiated the "2021 National Systemic Lupus Erythematosus Patients' Quality of Life Development Report" (hereinafter referred to as "Development Report") Officially released.

1 The quality of life of patients with lupus urgently needs the common attention of the society.
As the first patient rehabilitation management platform in China that deeply explores the mutual assistance and communication of patients with systemic lupus erythematosus (SLE), Mijian has always maintained a high degree of attention to this group of people.
Understand the social, economic, and diagnosis and treatment consequences of SLE patients due to the disease, and provide valuable insights to government departments, medical institutions, and public welfare organizations and other social sectors.
Under the guidance of the National Clinical Research Center for Skin and Immune Diseases, MiHealth United Physician Daily initiated a national survey on the quality of life of SLE patients in 2021.

It is hoped that this investigation will promote the feasibility of the whole-course rehabilitation management of SLE patients and the implementation of the concepts of “holistic rehabilitation” and “holistic treatment”, and provide a basis for the targeted development of related projects in the future.

Here, I would also like to solemnly thank the National Clinical Medical Research Center for Skin and Immune Diseases, and the instructors of the "Development Report" Professor Zeng Xiaofeng, Professor Li Mengtao and Professor Tian Xinping for their careful guidance, and thanks to the joint release of the Fang Physician Daily for their strong support.

It is the gathering of many forces that prompted the publication of the "Development Report".
We also call on more social forces to pay attention to the survival of SLE patients and work together to improve the quality of life of SLE patients! 2 Analysis of the main points of the "2021 National Systemic Lupus Erythematosus Patients' Quality of Life Development Report", the organizer's executive representative, Mijian founder and CEO Liu Wengui, shared the core points of the "Development Report".

Wengui Liu, founder and CEO of Mijian ①Health and diagnosis and treatment status Systemic lupus erythematosus (SLE) is an autoimmune disease, which occurs mostly in women of childbearing age.
It has a high risk of misdiagnosis due to its diverse onset symptoms and difficult diagnosis; 55.
4% Patients have lupus nephritis; more than 50% of SLE patients experience relapses during the course of the disease, of which 16% of patients have relapses ≥3 times, and more than 80% of patients hope that they can be followed up.

The development report shows that the condition of SLE is generally controllable, and 78.
4% of patients are in the "stable stage and reviewed on time", but more than 50% of patients experience relapses during the course of the disease, and 16% of patients have relapses ≥3 times, combined with SLE Generally, patients have a long course of disease (more than 50% of patients have the disease for more than 5 years).
It can be seen that patients with SLE have a long course of disease and are easy to recur, and long-term disease management is particularly important.

 Re-examination and follow-up run through the entire course of SLE patients.
However, in this survey, it was found that more than half of the patients have never been followed up by the hospital.
Among them, only 18% of patients have been followed up, and the frequency is mostly once a year; and more than 80% of patients hope I can get follow-up.

This situation reflects that some follow-up systems have not been standardized, and the frequency of follow-up varies greatly.
Comprehensive and full-course rehabilitation management urgently needs to be improved.

Featured medical treatment under the new crown epidemic: In 2020, the world will still not get rid of the shadow of new crown pneumonia.
With the advancement of epidemic prevention methods, the epidemic has limited impact on SLE patients; the overall satisfaction of patients with medical treatment is relatively good.

In this survey, only 31.
7% of patients (mainly patients in the stable stage and rechecked on time) have used remote consultation.
The main reasons for this group of people to choose remote consultation are: "it is inconvenient to go to the other party's hospital for consultation" and "the selected remote Doctors have a high level of expertise, etc.
The convenience of seeking medical care is a key factor in whether patients choose remote diagnosis and treatment, and “not knowing remote diagnosis and treatment” is an important reason that hinders patients from using remote diagnosis and treatment.

②Social adaptation and support patients' overall income level is low, and the financial burden is heavier; "Online patient group" is still the main way to acquire knowledge.

In this survey, patients with a disposable family income of less than 50,000 are the most, accounting for 47.
6%.
Although 97% of patients can enjoy national medical insurance, more than 70% of the respondents indicated that they paid for their treatment in the past year.
The proportion is more than 50%.
Nearly 40% of patients said that their annual treatment costs exceeded half of the family's disposable income, indicating that SLE patients' families have low disposable income, the proportion of medical reimbursements is limited, and long-term treatment causes a large economic burden.

 At the same time, with the launch of a new drug and the expansion of medical insurance to accommodate two SLE drugs, the use of biological agents has increased by 4.
3% compared with last year, indicating that SLE patients have a good acceptance of the new drugs, and the expansion of medical insurance also helps patients to be more autonomous.
The choice of medication, combined with the current situation of a high proportion of self-financed by SLE patients, should actively call for medical insurance expansion to reduce the burden of treatment, and also hope to accelerate the progress of new drug research and development, and increase support for patients and social security.

"Online patient groups", "communication with doctors in the hospital", and "new online media" are common ways for interviewees to learn about diseases.

In addition, the "short video" platform has become one of the emerging ways for respondents to learn about SLE.

③Quality of life The overall quality of life is acceptable, affected by a variety of factors, among which "fatigue" is prominent.

After discussing the limitations of the disease on the normal life of SLE patients from various aspects such as physical function, emotion, social interaction, pain and fatigue, it is found that more than 90% of patients are in a state of fatigue, and only less than 40% of patients feel energetic most of the time; The restriction on activities referred to is also obvious.
Forty% of patients are affected by depression or anxiety in their work and daily life.
At the same time, about 30% or less of patients are also suffering from poor health and pain, and thus have a negative impact on social life.
It also had a certain impact.

3 Experts offer suggestions for improving the quality of life of SLE patients.
The "Healthy China 2030" Planning Outline of the State Council pointed out that by 2030, the whole population and the whole life cycle of chronic disease health management will be realized.

For SLE patients, while improving the 5-year survival rate, it is also important to improve the quality of life, not only to live long, but to live well.

In the expert interpretation session, Professor Zeng Xiaofeng, director of the National Clinical Research Center for Skin and Immune Diseases and director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, shared his views on the topic of "difficulties and solutions to improve the quality of life of SLE patients": "For lupus erythematosus We must not only understand it clinically, but also understand the real life situation of patients.

Professor Zeng Xiaofeng made a speech.
From the development report, we found that lupus not only brings physical pain to patients, but also brings family and society Huge pressure to improve the high misdiagnosis rate and lack of standardized follow-up system for lupus diagnosis and treatment is imperative for lupus patients and society.

This development report involving nearly 4,000 lupus patients is for both medical workers and Patients and even formulating policies for relevant departments have a very good guiding role.

"4 All parties work together to help patients return to a better life.
SLE, as an autoimmune connective tissue disease that occurs frequently in women of childbearing age, often involves multiple organs.
The device has restricted life and work, and has a huge impact on patients and families.

Some highly educated patients lose labor or have nowhere to find employment, and cannot create more value for themselves, their families and society.

Through the "Investigation Report", we found that the differences in medical standards across the country have led to uneven early diagnosis and treatment of SLE.
Misdiagnosis and lack of follow-up are common.
The existing follow-up system has not been standardized, and the frequency of follow-up varies greatly.

Prevention of recurrence is an important goal of treatment in the stable stage of SLE, but most patients still fall into the dilemma of high-frequency recurrence.

Multiple relapses are often accompanied by expensive treatment costs.
Although most respondents have basic medical insurance, the coverage of medical insurance is always limited.
Long-term treatment puts patients and families under heavy financial pressure.

Speeding up the development of new drugs and expanding medical insurance coverage are still the voices of the majority of patients.

To this end, we also hope to further strengthen standardized diagnosis and treatment, improve the full-course rehabilitation management system, implement follow-up work, increase support for patients and social security, reduce the financial burden of patients, and help return to a better life.

Article source: Mijian Mutual Helper Review: Wang Lina For more content, please click: World Lupus Day ①| More than 600,000 people watched online, 12 celebrities gathered in the cloud to bring a gluttonous science feast to lupus patients World Lupus Day ②|Liu Zhihong The academician led the use of "multidisciplinary" tools to break the pain of multiple organ injuries in patients with lupus, "Physician Daily" award-winning survey waiting for you to participate in "Physician Daily" submission Public email: yishibao2017@163.
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