Supporting Patients on Immune Checkpoint Inhibitors: Creating an Education Resource Toolkit for Nurses

It has been shown that education prior to cancer treatment improves the patient experience by empowering patients to monitor for side effects and communicate to their healthcare team when guidance is needed (Wood, Moldawer, & Lewis, 2019). To improve how we educate our patients I started by providing cancer clinic nurses at The Ottawa Hospital as well as our five regional satellite sites in the Champlain region, with a review of current information regarding immune checkpoint inhibitors. This included mechanism of action and immune related adverse effects (irAE’s). The statistics of health literacy are quite sobering in that 60% of adults have low health literacy (Cancer Health Literacy Research Center, July 2021).  40-80% of medical information given by healthcare providers is forgotten immediately and almost half of what is remembered is incorrect (Kessels, 2003). I therefor introduced and educated nurses regarding a universal precaution approach to health literacy and reviewed strategies such as clear communication, assessment of patient learning needs, and assessment of understanding using methods such as teach back.

No single method of patient teaching has been proven to be superior as knowledge retention is based on individual learning preference (Valenti, 2014).  By performing an environmental scan of patient education resources for ICI’s that are being used by other cancer centers across Canada I was able to determine a benchmark to guide my development of a resource toolkit.  By curating patient education resources and making them available to nurses who are teaching about ICI, we can address a broader array of patient learning needs and preferences.  Through my review of patient-centered education and health literacy strategies, nurses are better able to assess for understanding and provide education based on the patient’s individual needs. 

Ensuring patient understanding regarding ICI treatment is important as it is associated with unique side effects and symptoms that can occur at any time during and even after treatment has ended.  Therefore it is imperative that nurses are educating and providing resources so that patients better understand how the drug amplifies their immune system and the potential for complications that may result. 

I developed presentations to share what I learned during my fellowship.  The presentations were divided into 2 parts, the first covered patient-centered education, health literacy, and a review of immune checkpoint inhibitors. The review of ICI included the mechanism of action, potential adverse effects and management strategies, as well as a review of ICI effect on sexual health, pregnancy and vaccine safety.  In part 1 I also reviewed principles of health literacy and implications for patient education.  I shared key strategies to overcome the challenges associated with low health literacy in practice, including a universal precautions approach, clear communication using plain language, assessing patient learning needs, barriers to understanding, and assessing for understanding using validated tools such as teach back.

The second part covered essential steps for assessing the need for and creating patient education materials, including establishing a planning group, identifying a target audience and purpose, consulting with subject matter experts, and utilizing tools such as Flesch-Kincaid readability calculator, PEMAT, and Clear Print Guidelines.  I reviewed how I developed a toolkit of resources and critically reviewed the material. I educated my colleagues on the steps I took to create a patient resource with management strategies for a grade 1 rash caused by ICI.  This entailed reviewing current practice recommendations, involvement of subject matter experts and patient and family engagement program, and finally to send the document to be translated into French and to printing for visual enhancement.  

Through this fellowship I became a resource and leader on ICI to my peers and to the organization. I created a network with other oncology nurses and educators within Canada to share patient education resources.  I have developed a toolkit for the cancer center nurse that provides links to reputable resources in different modalities that have been critically reviewed.  As well as a resource to help guide patients with management strategies for mild, grade 1 rash from ICI.  I am keen to maintain my knowledge of ICI and to advocate and network with other cancer centers to ensure we continue to adequately support our patients on these treatments in the future.