Background
Inflammatory bowel disease (IBD), which mainly includes ulcerative colitis (UC) and Crohn’s disease (CD), is a non-specific chronic inflammation of the intestinal tract. The incidence of IBD is rising in China, and the tendency for lifelong recurrence decreases the quality of life of IBD patients, especially those with severe disease [
1,
2]. Effective health education is helpful for the understanding and management of IBD.
Today, the internet and social media are widely used to acquire information.
WeChat, one of the most popular social media sites in China, has over 1 billion active users over the world [
3], far more than Facebook.
WeChat supports not only messaging and free calling but also all kinds of voice, photos, videos and articles, and
WeChat is deemed as an appropriate platform for patient education [
4,
5]. Many new public online platforms for IBD have emerged in China.
Data from Western countries have proven that patients with better IBD knowledge have higher medication adherence and better outcomes [
6,
7]. Current data showed that internet access for IBD patients was 81%, with 54% using the internet to obtain IBD-related information [
8]. Up to 55% of IBD patients were willing to receive education through social media or organizations such as the Crohn’s and Colitis Foundation of America (CCFA) [
9,
10].
The China Crohn’s and Colitis Foundation (CCCF) is a nonprofit, volunteer-driven organization dedicated to improving the quality of life of IBD patients in China through education and training [
11]. CCCF volunteers, who include medical staff, patients, family members of patients and social volunteers, are a group of people full of love and faith dedicated to helping IBD patients [
12]. These volunteers share their experience with other patients and help to organize various CCCF activities. However, the internet usage and attitudes towards the internet of CD patients and CCCF volunteers in China remain unclear.
This survey was performed to study the use of the internet and social media by CD patients in China, to compare the most popular WeChat CD public accounts and to analyse their impact of the internet and social media on the medication adherence of IBD patients.
Discussion
This research is a multicentre survey investigating the association between information sources for CD patients and popular social media sites in China. We compared the top five commonly used WeChat public accounts and their consistency with patients’ desired information and evaluated the impact on of these sites on medication adherence, providing a reference for improving further online education for IBD.
Over time, the traditional doctor-patient passive education model has gradually transformed into a model of active learning by patients themselves. A Spanish study found that 84% of patients showed an interest in IBD websites supported by the physicians of their referral centre [
14]. Studies from Ireland and the UK showed that IBD patients preferred getting face-to-face information from specialist doctors or nurses rather than the internet [
15,
16]. In our study, verbal teaching from gastroenterologists, communication with other IBD patients and online searches were the top three information sources for IBD patients, and this finding is consistent with those from previous studies. Moreover, CCFA was the most frequently used IBD-specific website in USA [
9], and their official website (
http://www.ccfa.org) ranked first in a study on the quality of IBD-related websites [
16]. Google, Facebook and YouTube were the most popular search engines in USA [
17,
18]. Compared with Western countries, we found that in China,
Baidu and
WeChat public accounts and medical related apps such as
Haodaifu were the most common platforms scanned. On
WeChat, CCCF, “
IBD Academic Officer” and “
IBD team of Sir Run Run Shaw Hospital” were the three most popular accounts among ten CD-specific
WeChat public accounts. The success of these
WeChat public accounts may be due to several reasons. First, “CCCF” is a non-profit, volunteer-driven organization aimed at helping patients affected by IBD through various education activities in China [
11]. Second, the CD-specific
WeChat accounts provided comprehensive information about IBD, mainly focusing on demands and caring of IBD patients. Lastly, the
WeChat public accounts frequently updated their sites with new articles, thus attracting frequent readers’ attention.
What information do IBD patients desire? A study from Spain suggested that IBD patients expected to be fully informed about their social and work rights, cancer and mortality risk and research trials [
19]. Another study in Ireland showed that IBD patients were most eager to obtain knowledge on medication, ‘what to expect in the future’, living with IBD, and diet [
15]. In addition, a study in Canada found that long-term prognosis and guidance on diet, topics that were regarded as important, were the least adequately addressed [
20]. In our study, consistent with results from other countries, advice on daily diet and exercises; the aetiology, clinical features and life expectancy of patients with IBD; and the latest developments in medicine were the top three preferences for CD patients in China.
As WeChat is the main way for patients to obtain information, we assessed whether these official accounts provided the required knowledge. It was observed that the top five WeChat public accounts concentrated on different aspects. CCCF, “love in IBD” and “The IBD team of SRRSH” concentrated on social activities and patient education, while “IBD Academic Officer” and “The World of Gastroenterology” focused mostly on medication-related knowledge and general disease introduction. We found only a weak correlation between the expectations of patients and the information. Moreover, very few articles presented content such as subsidies and discounts for treatment, which 60% of patients wanted to learn more about that. Therefore, the medical WeChat public accounts should ascertain the needs of patients and provide them with genuinely useful information.
The internet and social media sites not only gave guidance on medical treatment but also focused on psychological treatment and provided encouragement for patients. Our data showed that the choice of hospitals or doctors could change after internet searching. The searches allowed patients to learn more about professional IBD centres in different hospitals and choose more suitable treatment options. Reports from the UK revealed that frequent use of official information websites was associated with better disease-related knowledge and lower anxiety levels [
21]. Our study demonstrated that most patients felt more confident in managing their disease after internet searching. The patients gained empathy and energy from other patients’ stories and experience which were very beneficial in managing their disease. The internet could help patients learn more about their disease and encourage more timely follow ups. However, a larger clinical data sample and more prognostic data analyses are needed to draw a more definitive conclusion.
Although previous studies have shown that patients with greater knowledge have better disease coping strategies, there has been no previous information on the relationship between knowledge and treatment adherence [
7]. Our results showed that patients with higher incomes and greater access to the internet had better medication adherence. This outcome may be due to better disease understanding ability in high-income populations. Moreover, patients who frequently searched IBD information online had more timely follow-ups for their IBD clinic or hospitalization. However, there was no correlation with specific
WeChat accounts or other internet factors. On one hand, more time may be needed for the knowledge gained online to inspire a change in attitudes and behaviour. On the other, medication adherence could be influenced by different confounding factors, and the resources available to the IBD network were not effective enough to improve medical compliance. We would therefore recommend a better combination and balance of online and offline IBD education activities.
There are several limitations in this study. First, although we surveyed a large number of out and inpatients from eight hospitals in different areas, the sample may not be representative of all Chinese CD patients. Selection bias was inevitable which would make our study less persuasive. Second, our study did not include patients with no internet access, although these patients are potential network users and their information sources and expectations would add valuable information. Further studies are needed to focus on such patients.
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