Evaluation of the quality and accuracy of breast cancer knowledge among persian language websites

In recent years, the internet has become a powerful worldwide information source that revolutionized access to knowledge, especially in the fields of health and medicine [1]. Many patients and their relatives are turning to the internet for health knowledge. About 49.2% of the world's population uses the internet with more than 57.4% in the Middle East and 72% in the United States [2, 3]. Estimation of a meta-analysis study’s results showed a mean health literacy of 59.96, with a confidence interval (CI) of 57.01 to 62.90 in the Iranian population [4]. Among internet users, 59% have searched for health-related and medical information that 66% of them search for a specific disorder or disease, and 56% suggested searching for treatments [5]. However, this information could be inaccurate or incomplete. The accuracy and quality of medical information on the websites influence patient decisions concerning their treatment. On one hand, some websites’ health knowledge could be confusing to the audience or may exploit vulnerable patients by selling useless products or harmful devices [6, 7]. On the other hand, misinformation can delay timely action to control and treat the disease, or it may lead to the use of unverified therapies instead of standard ones [8]. This is especially true for information about cancer in general and breast cancer in particular. Among different types of cancer, breast cancer is the most common one with the deadliest malignancy among females comprising 18% of all women's cancer, both in developed and developing countries and Iran is not an exception [9]. According to the world health organization (WHO), breast cancer is classified as one of the most worrying factors in women's health [10] with significant mortality, accounting for approximately 15% of all female cancer deaths [11].

In order to diagnose and prevent breast cancer before the presentation of symptoms, mammography and ultrasonography should be done as the screening method in asymptomatic and high-risk patients [12, 13]. Treatment of breast cancer usually includes mastectomy and axillary lymph node dissection depending on the stage of the breast cancer. Radiation therapy, chemotherapy, hormone therapy, and targeted biological therapy can also be used depending on the stage of cancer and its biological characteristics [14‐16].

Various studies have shown that health knowledge about breast cancer can inform women about their disease and help them to make better decisions about treatment and care [17, 18]. In addition, according to the stage of breast cancer, a person needs different information [14]. Although patients can access physicians, pharmacists, and other healthcare providers, they may prefer to use the internet in some conditions including 1) lack of enough time, 2) the importance of the issue, and 3) distrust healthcare providers or the healthcare system. As a result, medical information needs to be properly processed and organized while searching so that the users can meet their specific needs [19].

The aims of this study, therefore, were to evaluate the completeness, correctness, accessibility, and transparency of breast cancer information provided to patients on the internet. Besides, the DISCERN instrument was used to assess the quality of the Persian language websites on this issue.

The outcomes of the website evaluation are presented by quality criteria. Performance is reported for all 30 websites, as well as by DISCERN instrument. As depicted in Table 1, among 250 searched links (50 links for each word), 30 websites were selected for evaluation. Websites of breast cancer knowledge were next presented based on criteria such as completeness (Table 4), transparency (Table 5), and quality (Table 6).

The main goal of this study was to evaluate the accuracy and quality of the Persian language breast cancer websites available on the Internet. These websites were evaluated for completeness, correctness, transparency, and accessibility, and the websites were also scored using the DISCERN criteria. The Google and Yahoo search engines were used to search the keywords “breast cancer”, “breast cancer symptoms”, “breast cancer treatment”, “breast cancer cause” and “breast cancer diagnosis” and 30 websites containing information related to breast cancer were selected for further evaluations.

We checked all 30 websites for their completeness and correctness, which showed different results for every item which includes; risk factors, screening and mammography, surgical treatment, chemotherapy, radiotherapy, hormone therapy, other medications, reconstruction methods, complementary medicine, and emotional or psychological support. Risk factors, surgical treatment, and chemotherapy were the three main topics that were covered in the reviewed websites (about 54% of all websites). Additionally, no information was found about breast reconstruction on any of the websites, and this might be due to cultural reasons. Topics that were minimally addressed were complementary medicine (3%), and other medications (2%), followed by emotional and psychological support (10%).

Risk factors and mammography screening were the most correct subjects (23%), while the maximum score for depth of information was related to breast cancer risk factors (23%), and then to a lesser extent, items such as mammography and screening and surgical treatment could be seen. A study conducted by Alnaim in 2019 declared that the information about breast cancer published in Arabic on these websites included risk factors (93%), screening and mammography (93%), surgical treatment (93%), chemotherapy (89%), radiotherapy (93%) and complementary drugs (0%). In addition, about 67% of the evaluated websites provided completely correct information [26]. However, in comparison with this study, the Persian language websites had lower completeness and depth.

In the current study transparency of Persian language websites about breast cancer was calculated using various criteria such as authorship, attribution, up-to-datedness, and disclosure of information. The summary of the scores showed that most of the websites contain relatively poor information for attribution, as the World Health Organization (WHO) revealed that websites that provide information on breast cancer had a relatively lower score compared to websites with other types of information [20]. According to our research, 60% of the websites provided author information, and 46% of them had a healthcare professional or expert as the author. While other studies declared that, only 35% of websites were authored by a healthcare professional [25]. Therefore, we are more likely to expect the websites to provide better and more accurate author information, as well as the same content provided by a healthcare professional.

According to the accessibility, in our study, 86% of the websites were easy with good accessibility. Akuoko et.al. studied the quality of breast cancer information on the internet in Africa and reported a moderate to high score for accessibility to these kinds of information [30].

Meric et.al has shown that the quality of websites by using the DISCERN instrument, demonstrated that most websites had poor and the rest had average quality [31, 32]. Similarly, in our study, most websites did not meet the expectations to provide quality information about breast cancer to an extent that 60% of websites were rated as very poor based on the DISCERN quality rating system.

The main advantage of the internet today is that, unlike traditional sources, it provides an easy and free way to update people’s knowledge. Many websites now incorporate Web 2.0 technologies to make more dynamic content. Also, it provides access to social networking sites, chats forums, live chats, and blogs that can promote and update one’s information in a short time. However, it is noteworthy that business websites and organizations need better governance in providing information [2, 20].

One of the most critical subjects which cannot be neglected is that on the internet space, everyone with every state of knowledge can share and present information about breast cancer. Hence, there should be supervision of the presented knowledge and the authors [32]. Therefore, the quality and accuracy of breast cancer information should be constantly improved and updated by professional healthcare or author, in order to be introduced to the patients as a reliable source to promote their information about breast cancer, by their physicians [5, 33]. We also suggest that physicians, webmasters, and authors should be more accurate in producing knowledge about breast cancer and all of this knowledge should be reviewed by a physician and oncologist before publication. Last but not least, high-quality, accurate, reliable, and relevant content on websites is an accessible and simple method for patients to provide the necessary information at the right time and relieve their anxiety so, it can help them to make their treatment decisions with more awareness.

HON (Health On the Net) Foundation issued a code of conduct (HON code) for medical and health websites to address the reliability and usefulness of medical information on the Internet. The principles of the HON code are authority, complementarity, confidentiality, attribution, justifiability, transparency of authorship, transparency of sponsorship, and honesty [34, 35]. In this paper, depth of knowledge, the correctness of the information, accessibility, and up-to-datedness were the terms that were more discussed compared to the HON.

Websites providing breast cancer information in the Persian language should be improved in terms of completeness, correctness, transparency, and accessibility. There are a limited number of websites that have reliable information about breast cancer in Persian, of which the National Center on Intensive Intervention (NCII) website was the best. Current research and all previous research show that most websites do not provide users with complete and correct information about breast cancer. Although the number of patients has increased, in most cases websites haven’t updated their content. Also, access to accurate information on the internet will help patients decide on their treatment methods. Generally speaking, it is the right of every patient to have access to complete, accurate, and reliable health information in a native language. Many aspects of the topics covered by this article require further investigation to understand barriers and solutions available to provide reliable information about breast cancer and how this information can affect the patient's outcomes.

The key message to the international community of informaticists, web designers, and patient advocacy groups is to build up accurate information on the internet and improve patient educational materials by using healthcare professionals in breast surgery, breast oncology, breast nursery, and midwifery, and giving the National Center on Intensive Intervention (NCII) website as the best one of its kind in rural and urban health centers in family health programs.