Experts write about | correct knowledge of the disease is of great significance for patients with inflammatory bowel disease

【Abstract】

The number of patients with inflammatory bowel disease (IBD) in China has increased dramatically, and to strengthen the disease management of patients, patients must be allowed to obtain correct and accurate disease knowledge. This paper explains that correct knowledge of IBD disease is of great value to disease diagnosis and treatment, chronic disease management and doctor-patient joint decision-making, and emphasizes the important practical value and far-reaching significance of providing accurate knowledge of IBD diagnosis and treatment for IBD patients.

Inflammatory bowel disease (IBD) includes ulcerative colitis (UC) and Crohn's disease (CD). IBD has gradually evolved into a global disease, including China, some newly industrialized Asian countries IBD incidence and prevalence increased sharply, its upward trend is similar to the 20th century in the Western countries, and the early course of the disease is close to the Western countries. Given China's large population base, it is predicted that the total number of IBD patients in China is likely to exceed that of North America in the near future. This suggests that not only does China already have a large number of IBD patients, but also a large number of IBD patients will soon emerge, which will inevitably bring great challenges to the national health system.

IBD is a chronic, lifelong disease, and good chronic disease management can not only improve clinical outcomes for patients, but also reduce health care costs, unplanned use of medical resources, hospitalizations, disease-related complications, and case fatality rates. The goal of good chronic disease management requires transforming sudden, occasional, and passive diagnosis and treatment into proactive, planned, and individualized long-term care. Such a goal can only be achieved if IBD patients and families are adequately integrated into chronic disease management.

To strengthen patient disease management, patients must obtain correct and accurate disease knowledge, while fully understanding the role, adverse reactions and treatment goals of the doctor's treatment plan. Due to the complexity, particularity and diversity of treatment drugs for IBD diseases, shard decision making (SDM) also occupies an important position in disease management and is an important part of high-quality health care services. Without a certain amount of disease knowledge, neither chronic disease management nor joint decision-making can be carried out smoothly, and how to let patients obtain correct disease knowledge in time is an important topic.

IBD patients are relatively young, the proportion of Internet use is extremely high, and the thirst for disease-related knowledge is very high, but the disease knowledge on the Internet is uneven, so how to let patients and families get the correct disease knowledge is of great significance for IBD diagnosis and treatment.

First, the importance of certain knowledge and cognition of IBD diseases in the diagnosis of IBD

IBD diagnosis and treatment is highly professional, for example, the clinical manifestations of small intestinal CD have diversified and occult characteristics, and there is a relative lack of IBD specialists in China, both of which lead to significant delays in the diagnosis of CD, or even misdiagnosis, and some patients have serious complications. Although many patients visit multiple hospitals, they still cannot get a correct diagnosis.

To change this situation, on the one hand, it is necessary to expand the training of IBD specialists as soon as possible, improve the level of IBD diagnosis and treatment in various departments, and at the same time, patients with related symptoms should also understand the common knowledge of the disease and find a medical team with IBD diagnosis and treatment capabilities in time. Because the incidence of IBD in China is relatively low, the understanding of the disease is later than that of Western developed countries, so the general understanding of CD by domestic doctors is limited.

On the other hand, China's network resources are developed, and young patients have a strong ability to obtain disease information through the network. The author has repeatedly encountered patients who have not been diagnosed in time in the local clinic, but the patients themselves have obtained disease information through the Network and found the IBD specialist team, so as to obtain positive diagnosis and treatment. If we can improve the society's awareness of IBD, IBD patients can find the IBD specialist team in time, which is one of the most important factors to reduce delayed diagnosis.

Second, the importance of correct knowledge education on IBD disease for IBD treatment

For patients, the education of disease-related knowledge is not only positive in diagnosis, but also more important in the treatment of IBD. Its importance is mainly reflected in the following five aspects:

01

Determination of the goal of treatment

The concept of standard treatment not only needs to be deepened at the medical end, but also needs to popularize the knowledge and concept of IBD disease at the patient end, because to achieve the standard treatment, it requires the active cooperation of IBD patients outside the hospital, and the endoscopy, fecal caltamin and other examinations are carried out on time. In addition, the formulation of IBD treatment goals also needs to fully reflect the principles of "individualization" and "patient-centered", so recently there have been methods such as IBD experts and patient organizations working together to develop treatment goals.

02

Awareness of adverse reactions

There are many types of IBD drugs, and some of them have obvious adverse reactions. Taking the commonly used immunosuppressant azathioprine as an example, the drug has an important position in both the traditional treatment era and the biological agent era, but its adverse reactions are many, including leukopenia and even severe agranulocytosis, liver function damage, acute pancreatitis and lymphoma. Therefore, it is necessary to carry out adequate drug-related knowledge education and follow-up for all patients using this type of drug, and if the patient is not fully aware of the adverse reactions of the drug, it may lead to serious consequences in the long-term out-of-hospital medication process.

In addition to immunosuppressants, biologics, especially anti-tumor necrosis factor (TNF)-α monoclonal antibodies, although they have good anti-inflammatory effects and pro-mucosal healing function, but also have the possibility of complicated severe infection and the appearance of drug antibodies. Therefore, patients should also have the correct drug knowledge while using biological agents, find adverse reactions in time during the injection of drugs, and understand the possibility of failure, so that they can be treated in time at the beginning of complications, or the treatment plan can be adjusted as soon as possible when the drug fails.

03

Choice of treatment

Treatments for IBD are diverse, and each has its advantages and disadvantages. For example, the adverse reactions of whole enteral nutrition therapy of CD are small and the efficacy is exact, which has been widely used in CD patients in China over the years. However, this method significantly affects the quality of life of patients, so whole enteral nutrition should be used at the right time. Whether it is excessively prolonging the use of whole enteral nutrition or using whole enteral nutrition too early, it is contrary to the treatment goals of IBD, and patients should be guided to adjust the treatment plan and improve the quality of life during the treatment process.

At present, the types of various biological agents in China have increased significantly, and the selection of suitable biological agents not only requires doctors to balance according to the characteristics of the disease and adverse drug reactions, but also needs to consider the wishes and needs of patients. Joint doctor-patient decision-making has positive implications for the selection of biologics and the timing and duration of enteral nutrition.

04

Medication in special cases

Patients with IBD often face fertility-related problems, and it is not uncommon for patients with pregnancy-related diseases to stop their own medications, and it is not uncommon for them to eventually lead to recurrence of the disease.

05

Choice of timing of surgery

In addition to the choice of internal medicine drugs, surgery is often inevitable in the treatment of some IBD patients, and the timing of surgery determines the success or failure of IBD surgical treatment, among which the timing of elective surgery especially requires communication and trust between doctors and patients. Taking the timing of CD surgery as an example, the appropriate timing of surgery can improve the success rate of definitive surgery, reduce the risk of surgical complications, and help maintain long-term remission of CD and delay recurrence. Conversely, the risk of postoperative complications and recurrence may be increased.

This "proper surgical timing" is often the time when the patient's condition is relieved, and if the patient does not fully understand the concept of CD surgery and rehabilitation, it is likely to delay the operation again. Therefore, the timing of elective surgery is also inseparable from good patient education, and the joint decision-making of doctors and patients is more conducive to patients understanding the choice of this timing.

Third, the importance of IBD disease knowledge for doctor-patient joint decision-making

Physician-patient co-decision-making is a process of sharing disease knowledge between patients and physicians to meet patients' need for deep involvement in diagnosis and treatment, improve compliance and satisfaction, and reduce healthcare costs for patients with IBD. In China, due to the lack of medical resources and the traditional social context of medical treatment, doctor-patient joint decision-making is still in the preliminary stages, but a recent survey by us showed that the majority of patients with IBD (84.5%) want to participate in the joint decision between doctors and patients (unpublished). However, the premise of shared decision-making is that patients need to have a certain understanding of the disease, which is also closely related to health education.

Fourth, the way to obtain disease knowledge in patients with IBD

IBD disease diagnosis and treatment process always needs correct and timely disease knowledge, at present, although there are many relevant IBD pharmaceutical network platforms at home and abroad, but the literature shows that the source of many IBD network data is inaccurate or even wrong, and a higher proportion of network resources come from commercial institutions or pharmaceutical companies, which may mislead patients. Therefore, whether it is IBD professional care or patient organizations, it is necessary to expand the education of IBD medicine-related knowledge that is truly value-oriented to patient needs, and if the two jointly edit educational resources suitable for patient understanding, such as IBD patient consensus, it can play a maximum role. How to make the correct medical knowledge such as patient consensus reach every IBD patient and family faster, more conveniently and more accurately is a new topic that requires the joint intervention of a professional team of health communication media.

In short, IBD disease knowledge is of great value to disease diagnosis and treatment, chronic disease management and doctor-patient joint decision-making, although in today's network society, the IBD medical knowledge that can be shared is rich, but the quality is uneven. Therefore, it is of great practical value and far-reaching significance for IBD professional teams and patient organizations to provide IBD patients with accurate knowledge of IBD diagnosis and treatment (such as patient consensus, etc.).

Author: Chen Yan, Department of Gastroenterology, Second Affiliated Hospital, Zhejiang University School of Medicine

Citation: Chen Yan. Correct disease knowledge is important for patients with inflammatory bowel disease [J] . Chinese Journal of Inflammatory Bowel Disease, 2021, 05(4): 299-301. DOI: 10.3760/cma.j.cn101480-20210901-00066.

Source: Chinese Journal of Inflammatory Bowel Disease