The internet has become a widely used source of health information by the public, including cancer patients. However, the quality and reliability of online information vary greatly, leading to misunderstandings of treatments and, ultimately, reduced quality of care for those living with cancer.
In a recent paper, Marrah Nicolas-Joseph, U3 at McGill’s Ingram School of Nursing, and colleagues evaluated the quality of online information on cancer treatment and proposed a template for high-quality resources for cancer patients receiving immunotherapy.
Immunotherapy, an increasingly common type of cancer treatment, works to boost the immune system to target cancer cells. This type of therapy can train the immune system to remember cancer cells, effectively preventing cancer from recurring in the long term.
Despite the clinical benefits of immunotherapy, it often causes severe side effects, such as fatigue, diarrhea, liver injuries, and lung inflammation. The onset of these symptoms often causes patients to interrupt their treatment. Therefore, managing these unpleasant side effects is a priority in improving patients’ quality of life.
To support patients dealing with the side effects of immunotherapy, high-quality, online resources must be a priority. In their paper, Nicolas-Joseph and her team, under the supervision of associate professor Sylvie D. Lambert, identified publicly available resources, including webpages, pamphlets, and booklets, through various search engines. Each resource included was scored based on its quality.
“High-quality resources are those that comprehensively address immunotherapy’s side effects,” Nicolas-Joseph wrote in an email to The Tribune. “These resources may significantly optimize patient health literacy and promote patients’ involvement in decision-making.”
They found that many of the online resources were written at an inappropriate literacy level. The average reading grade level was equivalent to a post-secondary reading level, meaning that the resources were relatively difficult for the general public to understand.
Nicolas-Joseph’s team also determined that the resources lacked depth and comprehensiveness. While the online resources addressed areas such as how each treatment works and explained the benefits of treatment well, other important information, such as the risks, the chances of not receiving medical care, and the effects of medicine on the overall quality of life, were poorly explained. Similarly, resources did not adequately address strategies for patients to self-manage immunotherapy’s side effects, especially loss of balance, bloating, and slowed thinking.
The researchers also found that the method of delivery could affect the average quality of the resources.
“Pamphlets and booklets were [of higher quality], as they usually included more graphics and illustrations than webpages, which enhance patients’ learning,” Nicolas-Joseph wrote.
Overall, the findings suggest that there is a lack of high-quality resources to teach patients who are receiving immunotherapy how to self-manage the side effects.
“As immunotherapy is a relatively new cancer treatment, we expected few educational resources for patients online. Indeed, most of the resources found on the internet during the search were addressed to the scientific community,” Nicolas-Joseph wrote. “Moreover, it seems like there is a lack of guidelines for developing information resources.”
So, the team developed a template for patient education material based on publicly available high-quality resources.
“We decided to create a template for patient educational resources based on the suitability, readability, and quality criteria used to evaluate the included resources in the research to make the manuscript more useful to readers,” Nicolas-Joseph wrote.
The template includes several sections addressing why after-treatment symptoms arise, how the symptoms can affect a patient’s quality of life, when to get help for the symptoms, and how to self-manage the symptoms. The template also provides detailed guidance on what information to include under each section.
On a larger scale, this paper points to the importance of developing high-quality resources for patients to self-manage a range of other illnesses, such as diabetes.
