Some websites may not be effective in helping cancer patients make treatment decisions
Cancer patients often turn to the Internet to find information about treatment options, but not all websites are created equal. Websites featuring pancreatic treatment modalities differ significantly in the way they present information based on therapy type, according to new findings presented at the 2016 Annual Clinical Congress of the American College of Surgeons. Websites from non-profit organizations focusing on surgery or radiotherapy are easier to understand and potentially increase patient knowledge the most, compared to websites discussing other therapies such as clinical trials and chemotherapy, researchers report.
"We know from our prior work that patients are utilizing the Internet to obtain health information, so as physicians advocating for pancreatic cancer patients we want to know that this online information is accurate and understandable," said lead study author Alessandra Storino MD, a general surgery resident at Beth Israel Deaconess Medical Center, Boston.
Previous research evaluated the quality of online information on pancreatic cancer, but the analyses were based on accuracy as rated by health care professionals.1 This study is the first one to assess how the information is perceived by the general public. "Our previous work demonstrated that users have to have a high level of education to understand the information," Dr. Storino said.
For this study, Dr. Storino and colleagues recruited 10 community volunteers who were not pancreatic cancer patients. Volunteers were asked to evaluate 50 websites discussing five treatment modalities for pancreatic cancer. The therapies included alternative therapies, chemotherapy, clinical trials, radiotherapy, and surgery.
To evaluate each site, volunteers used what's called the Suitability Assessment of Materials (SAM) instrument. For each site, volunteers addressed the following factors: overall suitability (defined as how appropriately health information increases patient knowledge and facilitates decision making); readability; accuracy; and likelihood to be recommended. Based on volunteer feedback, each website was assigned a SAM score regarding the website's layout, how appropriate and readable the content was, the quality of visual aids, learning stimulation, and cultural appropriateness. Additionally, volunteers reported how likely they would be to recommend the website to someone diagnosed with pancreatic cancer.
According to study findings, clinical trials websites had lower SAM scores, despite having the highest accuracy. Surgery websites had higher SAM scores, compared to alternative therapies, chemotherapy, and clinical trials websites. Surgery and radiotherapy websites were recommended more than other treatment modalities and non-profit websites were more strongly recommended than private websites.
Interestingly, the strength of the recommendation and suitability scores were influenced most by the presence of videos and pictures. At the same time, the accuracy of medical information correlated weakly with strength of recommendation. "The most important finding is that the volunteers focused on how user-friendly the websites were and if they had pictures or not. The fact that having a friendly layout was what got the attention of patients is a shocking finding," Dr. Storino said. "This finding is important because it implies that patients select user-friendly websites and assume they are accurate, relying on website creators to obtain accurate information"
About 229 million Americans–72 percent of all Internet users–look online for health information,2 yet few carefully evaluate their sources. "This type of research, which looks at what type of information might help patients participate in their own care, is crucial. Having easy access to more appropriate information could not only improve their health outcomes, but it should improve their ability to participate in decision making, for themselves and their family members," said study coauthor Tara S. Kent, MD, MS, FACS, assistant professor of surgery at Havard Medical School, Boston.
Moving forward, the study authors plan to use these study results to help cancer patients navigate the most effective websites. "We now know that pictures are important to online users so we could identify or create websites that provide accurate information and enhance usability with pictures; and as a surgeon, I can suggest websites to patients and families that I have already vetted for accuracy, and that I think they would like," Dr. Kent said. "Overall, good online sources of medical information can help prepare patients for the discussion of what their treatment should be."
Other study participants include Camila R Guetter; Manuel Castillo-Angeles, MD; Ammara A Watkins, MD; Joseph D Mancias, MD, PhD; Andrea J Bullock MD, MPH; A James Moser, MD, FACS.
"FACS" designates that a surgeon is Fellow of the American College of Surgeons.
This study was supported by a grant to Dr. Tara Kent from the Alliance of Families Fighting Pancreatic Cancer (http://affpc.org/).
1 TS Kent et al. Assessing the Accuracy and Readability of Online Health Information for Patients With Pancreatic Cancer. JAMA Surg. 2016 Sep 1;151(9):831-7.
2 Pew Research Center. Health Fact Sheet. Available at: http://www.pewinternet.org/fact-sheets/health-fact-sheet/.
Accessed September 14, 2016.
About the American College of Surgeons
The American College of Surgeons is a scientific and educational organization of surgeons that was founded in 1913 to raise the standards of surgical practice and improve the quality of care for surgical patients. The College is dedicated to the ethical and competent practice of surgery. Its achievements have significantly influenced the course of scientific surgery in America and have established it as an important advocate for all surgical patients. The College has more than 80,000 members and is the largest organization of surgeons in the world. For more information, visit http://www.facs.org.