Supporting Patients on Immune Checkpoint Inhibitors: Creating an Education Resource Toolkit for Nurses
The Ottawa Hospital Cancer Center Clinics provide outpatient care to adults with solid tumour malignancies. Systemic treatments available to our patients include chemotherapy and radiation, as well as immune, targeted and hormone therapies. The Cancer Clinics boast a multi-disciplinary team that provide support to patients throughout the illness trajectory. The role of the Cancer Clinic nurse requires a holistic approach to comprehensive health assessments, patient and family education and symptom management support. Nurses working in the cancer clinics provide care at the initial consult, visits during treatment and via our Patient Support Line, where patients can call for assistance if they are experiencing side effects at home.
Patient education is central to the role of the Cancer Clinic Nurse and with new and complex cancer treatments emerging, it is imperative they have the knowledge and resources to optimize patient education (Lambourne, Minard, Deal, Pitman, Rolle, Saulnier, & Houlihan, 2018). Immune checkpoint inhibitors (ICI) have emerged as the newest pillar of treatment in oncology, first gaining traction in Canada in 2011 with the approval of Ipilumumab, the first treatment in history to increase survival of patients diagnosed with advanced melanoma (Cancer Research Institute, 2021). ICI’s are becoming increasingly used in the outpatient setting to treat a variety of cancers. With the increasing use of ICI in clinical practice, it is critical that Cancer Clinic Nurses be able to assess patient learning needs, identify educational barriers, and provide patient-centered education with a focus on the unique action and toxicities of these medications. When patients are receiving care on an outpatient basis, it is imperative we effectively educate them about managing mild side effects as well as when to seek medical attention for symptoms that are severe.
My fellowship focused first on patient-centered learning and increasing my knowledge of current strategies for educating patients using a universal precautions approach to health literacy. I then sought to increase my understanding of immune checkpoint inhibitors, and performed an environmental scan of what resources Cancer Centers across Canada were using for patient education and symptom management.
This fellowship was aimed at increasing my clinical knowledge and expertise in educating the adult patient diagnosed with a solid tumor and receiving an (ICI) in the outpatient setting. I focused on increasing my understanding of ICI by completing a review of mechanism of action, adverse events and management strategies, blood work requirements.
I then focused my attention on how we educate patients about these therapies. I was very interested in health literacy and set out to learn more about its implications for nursing practice. Health literacy is defined as “The ability to access, comprehend, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course.” (Rootman & Gordon-El-Bihbety, 2008). The current recommendations include strategies such as a universal precautions approach, clear communication, assessment of patient learning needs, and assessment of understanding using methods such as teach back.
My next step was to determine what resources other cancer centers in Canada were using to see if there were any commonalities. One issue many cancer centers across Ontario face is creating and maintaining resources without dedicated patient education staff. Our Patient Education Committee developed a guideline for assessing the need for creating and updating patient education material. Using this resource ensured that I critically examined existing patient resources by using validated tools such as Flesch-Kincaid readability calculator, Patient Education Material Assessment Tool (PEMAT), and clear print accessibility guidelines.
Through my environmental scan I was able to develop a list of common resources used by cancer clinics across Canada. I examined these resources as well as the resources The Ottawa Hospital is using to determine where our gaps were. With the appropriate permissions, I consolidated external resources into a toolkit for nurses who care for patients on ICI and included information such as reading level and PEMAT scores. The toolkit will be shared with my colleagues and the Cancer Program Patient Education Committee as a demonstration of how this process of developing sustainable practices for patient teaching can be used in other contexts.
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.
This fellowship provided an amazing opportunity to increase my knowledge of health literacy, patient centered education, and immune checkpoint inhibitors. One of my favourite experiences was having the opportunity to network with other cancer centers and to see the amazing resources they have created. It was invigorating to see the shared passion of ensuring quality care to our patients. It became apparent early that being flexible and open to change was essential as my project progressed. It is not possible to create multiple sustainable education resources that would consider health literacy and be appropriately vetted given the timeframe. I came to realize it is just as important to acknowledge gaps in practice and identify need for future work to be done. I had no prior experience with developing patient education material and I found the goal of my project changed the more I learned. With limited resources for developing and sustaining patient-facing material, the importance of sharing my new knowledge of tools such as readability calculators, PEMAT, and how to evaluate the credibility of a website would be very valuable to nurses. This would also help to ensure the resource I had developed would be easy to maintain and add to in the future. Therefore, not only did I create a toolkit of educational resources for nurses to use but I also educated nurses on how to determine whether a resource was reputable and useful to our patients which is a more sustainable approach.
A challenge that I did not foresee was the amount of time it would take to complete an environmental scan. While I did receive a lot of helpful information, I was not able to receive answers to all my questions from all Canadian stakeholders within the timeframe of this fellowship. Additionally, ICI has only been around 10 years and therefore we are still learning about the effects of immunotherapy and long term complications of this treatment. As more disease sites begin using ICI it will be important to continue reviewing the literature to ensure my knowledge and our patient education toolkit is up to date.
Cancer Health Literacy Research Center. (July 2021). Retrieved Sept. 15, 2021 from https://www.uhn.ca/PrincessMargaret/Research/Research_Programs/Health_Literacy_Research_Centre
Cancer Research Institute. (2021). Timeline of Progress in Immunotherapy. Retrieved April 30, 2021. https://www.cancerresearch.org/immunotherapy/timeline-of-progress
Kessels, R. P. (2003). Patients’ memory for medical information. Journal of the Royal Society of Medicine, 96(5), 219-222.
Lambourne, T., Minard, L., Deal, H., Pitman, J., Rolle, M., Saulnier, D., & Houlihan, J. (2018).
Optimizing Patient Education of Oncology Medications: A Patient Perspective. Journal of Cancer Education. Retrieved May 3, 2021. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6785581/
Rootman, I. & Gordon-El-Bihbety, D. (2008). A vision for a health literate Canada. Ottawa, ON: Canadian Public Health Association.
Valenti, R.B. (2014). Chemotherapy education for patients with cancer: A literature review. Clinical Journal of Oncology Nursing, 18, 637–640. https://doi.org/10.1188/14.CJON.637-640
Wood, L., Moldawer, N., & Lewis, C. (2019). Immune Checkpoint Inhibitor Therapy: Key Principles
When Educating Patients. Clinical Journal of Oncology Nursing, 23(3), 271-280 DOI:10.1188/19.CJON.271-280