- Email: [email protected]
Patient Education Issues and Strategies Associated With Immunotherapy
ARTICLE IN PRESS Seminars in Oncology Nursing 000 (2019) 150933
Contents lists available at ScienceDirect
Seminars in Oncology Nursing journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing
Patient Education Issues and Strategies Associated With Immunotherapy Marlon Lasa-Blandon, MSN, RN, OCNÒ ,*, Kristen Stasi, BSN, RN, OCNÒ , Ashley Hehir, BSN, RN, OCNÒ , Erica Fischer-Cartlidge, DNP, CNS, CBCNÒ , AOCNSÒ Memorial Sloan Kettering Cancer Center, New York, NY
A R T I C L E
I N F O
Keywords: Immunotherapy Education Nursing Educational barriers Adult learning
A B S T R A C T
Objective: To provide education strategies to health care providers caring for patients receiving immunotherapy and who are managing the various potential adverse events related to these treatments. Data Sources: Peer-reviewed literature. Conclusion: Delivering patient education on immunotherapy based on a thorough educational needs assessment and identification of learning barriers may contribute to effective patient outcomes and patient safety. Implications for Nursing Practice: It is a critical role of the nurse to educate and empower patients and caregivers with the ability to identify early signs of impending toxicities related to immunotherapy regimens. With continuous learning and clinical experience, oncology nurses are at the forefront for providing highquality immunotherapy education to patients and caregivers. © 2019 Elsevier Inc. All rights reserved.
Introduction From inception, immunotherapy had minimal social impact and awareness, yet with recent discoveries in oncology, these drugs have revolutionized the use of a new modality for cancer care.1 Many adult oncology patients require complex care, which is heightened as new treatments with different management strategies, like immunotherapy, are added. With this, these new therapies have resulted in new challenges for nurses in providing patient and caregiver education. Traditional oncology treatment frequently relied on chemotherapy agents for disease management that has had a side-effect profile and management process that has been largely stable for decades. Immunotherapy works by activating the immune system to recognize cancer. Treatment modalities can range from checkpoint inhibitors to oncolytic viral therapies to chimeric antigen receptor (CAR) T-cell therapy. Checkpoint Inhibitors activate the immune system to recognize cancer cells but can attack normal tissues, causing autoimmune disorders such as colitis, pneumonitis, and dermatitis. In comparison, CAR T-cell therapy can cause cytokine release syndrome that may manifest as hypotension, fever, and dyspnea.2 CAR T-cell therapy may also cause neurotoxicity in patients with B-cell malignancies.2 The side-effect profile is vastly different from chemotherapy, as is their management. Nursing interventions enable early recognition and intervention of adverse events possible and support a continuation of treatment post resolution.3 The heart of toxicity management begins with a nurse’s ability to provide patient education. * Address correspondence to: Marlon Lasa-Blandon, MSN, RN, OCNÒ , Nursing Professional Development Specialist, Memorial Sloan Kettering Cancer Center, 1233 York Ave., SR-22, New York, NY 10065. E-mail address: [email protected] (M. Lasa-Blandon). https://doi.org/10.1016/j.soncn.2019.08.012 0749-2081/© 2019 Elsevier Inc. All rights reserved.
Patient education is one of the most important competencies offered to patients by nurses.4 Patient education is defined as the training and counseling of patients.5 In oncology specifically, a review by Valenti6 reported that patient education before first treatments has been shown to reduce anxiety when it includes content related to treatment and side-effect management. Through patient teaching, knowledge is exchanged and patients become active members in participation of their health care.4 Oncology nurses treat a diverse group of patients with different levels of health literacy. Therefore, nurses must use specific strategies to ensure effective patient education and methods that are individualized to the patient’s level of health literacy and preferred method of teaching. The oncology nurse must comprehend how to teach and identify individual patient barriers. These aspects will have a direct impact on the success of toxicity management for the oncology patient. For patients receiving immunotherapy, the nurse provides unique toxicity management through continued patient education on side effects and early recognition of symptoms.7 By deepening the understanding of potential toxicities, patients will acquire adequate tools essential for managing adverse events. This article will discuss evidence-based assessments and techniques for the delivery of patient education in the setting of immunotherapy treatment for adult patients.
Principles of Andragogy Andragogy is defined as “the art and science of helping adults learn.”8 In the context of this article, the principles of learning and techniques for teaching are focused on the adult learner receiving immunotherapy treatments and/or the care giver. One of the most influential educators to have contributed to the development of
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M. Lasa-Blandon et al. / Seminars in Oncology Nursing 00 (2019) 150933 Table 1 Knowles’ principles of adult learning in action. Knowles’ Principles of Adult Learning
Examples in Action
Self-concept and self-directed: Adults should be involved in the content and process of learning9
Ask patients what their preferred learning method is Offer a variety of learning tools (reading materials, videos) Ask the patient for feedback and understanding on the material being presented Compare treatment of side effects from previous standard-of-care therapy and how these are managed differently while on immunotherapy: “It is important to note that potential side effects on this new treatment are treated differently. If you developed diarrhea while on chemotherapy, we’d prescribe XYZ medication. If you develop diarrhea while on immunotherapy treatment, XYZ medication would not work and a different treatment to address the diarrhea must be started. You must call the office immediately if diarrhea develops while on this new treatment.” Discuss how immunotherapy treatment can impact the patient’s life and work balance Recommend a support group for patients and caregivers Share other patient clinical experiences while maintaining privacy Education on immunotherapy should be continuous, providing the patient with time to learn Use the teach-back method Present a problem-solving scenario to the patient and have them share how they would handle it. For example, “You received your last dose of immunotherapy a week ago and noticed a diffused rash to your arms and legs that presented overnight. What is the first thing you should do?”
Use previous experiences: Adults have a large reservoir of experiences, utilize these to help them learn9
Adults are practical learners: The content being taught should illicit issues related to their work and personal life9 Centralize learning on solving problems v memorizing content9
andragogy was Malcolm Knowles.8 His theory of andragogy was based on four principles:
1. Adults need to be involved in the planning and evaluation of their teachings; 2. Adults utilize past experiences to help them learn; 3. Adults are engaged by teachings that have immediate relevance to their social roles and life; and 4. Adult learning is problem-centered rather than contentoriented.9
In the setting of educating adult patients receiving immunotherapy treatments, strong considerations should be given to their readiness to learn and ability to effectively apply these new teachings to their care. Although considered a standard of care in several disease type settings, immunotherapy treatments and guidelines are still new to patients, caregivers, and nurses. It is critical for nurses to comprehend the risks and treatment plans established to care for patients on immunotherapy modalities and how these differ from other standards of care. As educators, nurses should establish effective teaching platforms by applying Knowles’ principles of andragogy to their patient populations. Table 1 lists the principles and provides examples on how to apply them when educating patients receiving immunotherapy treatments. Effective teachings of immunotherapy modalities are a continuous collaboration between the nursing team and patient/caregiver.
have more than one preferred learning style and incorporating these will produce better teaching outcomes.
Barriers to learning Part of the assessment before initiating education must be the identification of potential or actual barriers to learning. Barriers to learning can be related to physical and environmental factors, language and culture, and health literacy.10 When educating patients, consider physical barriers. Examples of physical barriers include increased age, decreased visual and audio clarity, altered mental status because of ailments or drug interventions, decline in cognitive capacity, memory and comprehension of certain abstracts, pain, and anxiety from starting a new treatment regimen.10 Environmental barriers must also be addressed. These include evaluating the lighting in the room, the level of background noise, and the temperature in the room, which may all interfere with the patients’ learning experience.10 These environmental barriers may be challenging to address because of limited access to control lighting, temperature, and noise.10 To overcome the barrier of language and culture when educating patients, nurses must be culturally competent. The Joint Commission emphasizes the importance of cultural sensitivity and competency in the health care setting because clinicians who are sensitive to the preferences of patients based on their culture, spirituality, and ethnicity provide a higher level of quality care.11 Health care institutions Table 2 Various learning styles: teaching tools and strategies.10
Pre-Education Assessments Learning preferences The preferred method of learning is individualized and should be highly regarded before implementing immunotherapy patient teaching. Preferred and effective individualized learning styles are developed in childhood and continue throughout adulthood.10 Before initiating immunotherapy education, the nurse should assess the patients’ preferred learning style because this is essential for effective teaching and memory retention.10 Learning styles include visual, auditory, read/write, and kinesthetic. Based on the learning preferences, different strategies should be used for delivering education (see Table 2). It is important for the nurse to consider that patients may
Learning Styles
Teaching Tools and Strategies
Visual learner
Visual aids Pictures Graphs Videos Tablets Audio tapes Rephrase important elements Listening to verbal instructions Provide written material Encourage note taking Utilize various learning styles Provide hands-on learning, if applicable Return demonstration “Teach-back” method
Auditory learner
Read and/or write learner Kinesthetic learner
ARTICLE IN PRESS M. Lasa-Blandon et al. / Seminars in Oncology Nursing 00 (2019) 150933
are required to demonstrate cultural competency in the care provided. Thus, nurses should be aware of their cultural biases and educate themselves on the cultural perspectives of the patients they provide care to. Patients from a multicultural environment rely on their beliefs and traditions (ie, some religions regulate the individuals clothing style, dietary patterns, and notions that diseases come from God12) when making decisions about their health. This can greatly impact their cancer care.13 This may also impact how information is delivered and how the patient wants to be involved in the education experience. Language is a barrier that must be assessed before providing education about immunotherapy treatments and immune-related side effects and how they differ from prior treatments that may have been received, such as chemotherapy. The patient assessment should also evaluate whether an interpreter or translation service is needed. Karliner et al14 investigated physicians’ experiences communicating with patients with limited English proficiency. Those who used the service of a professional interpreter were able to have a better discussion of the risk and benefits of treatment with their patients. Some strategies to consider when using a professional interpreter while educating the patient and caregiver include: allowing extra time for the visit; seat the interpreter next to or slightly behind the patient; speak directly to the patient and not the interpreter; ask only one question at a time; avoid acronyms, jargon, or humor; use the “teach back” method (having the patient or caregiver being educated express in their own words what was taught to them) to validate comprehension.15 Research shows having accessibility to various interpreter methods (eg, in-person, telephone, or video conference) to use with patients who are non-English speakers can improve the patient and health care team encounter.16 In a quasi-randomized control study comparing in-person, video, and telephone medical interpretation, encounters with in-person interpreters were rated higher by the health care team and interpreters, while patients rated all three methods the same.16 Utilizing trained interpreters is linked to improved patient satisfaction and utilization and compliance to health care, including screening and filling medications, while reducing unnecessary testing.16 Although the terms ”translator” and ”interpreter” are often used interchangeably, there are differences between the two. According to Jones and Boyle,17 a translator changes written text into another language, while an interpreter listens to a spoken language and changes it into another language. When developing a plan to educate patients about immunotherapy, an assessment of the patients’ cultural values and beliefs must also be performed.10 Patient education of immunotherapy that incorporates cultural values and practices pave the way for compliance and positive patient outcomes. Another factor to consider with patient education is time. In the fast-paced world of nursing, finding time to devote to educating patients and caregivers is often a challenge.10 It is important for nurses to anticipate the patient and caregiver’s educational needs and effectively manage their time. Financial Considerations Financial toxicity is a term used in the discussion of cancer drugs given the high price of newer classes of therapies, such as immunotherapy. Although cancer drugs are often the key to progression-free survival (if not overall survival) for a patient with cancer, their use may subject the patient to extreme financial burden and distress.18 Financial burden is also an important factor to assess when reviewing education with patients. Concerns about finances can affect a patient’s ability to focus on learning and may also impact medication adherence. Proactively addressing these issues can be a preventative measure. In addition, oncology nurses can help to ensure that patients are aware of educational and financial resources for their therapies and how to access such resources. For example, most
3
pharmaceutical companies have programs to defer costs and patients can apply to receive financial assistance for these costly immunotherapy treatments.19 Immunotherapy Education Immunotherapy may or may not be first line of therapy for patients. Treatment options are individualized by the type and stage of the cancer. For patients receiving immunotherapy as their second or third line of therapy and those receiving it as first line, it is equally important for patients and caregivers to understand the differences between cytotoxic chemotherapy and immunotherapy. Cytotoxic drugs interfere with cell division and DNA synthesis, while immunotherapy targets the induction of anticancer immune responses. Efficacy of cytotoxic chemotherapy depend on tumor shrinkage, whereas in patients receiving immunotherapy, metastasis may grow or new lesions may even develop before there is a decline in total tumor burden because of the infiltration of lymphocytes into tumors. An important teaching point when educating patients on immunotherapy is that side effects associated with these therapies result from a dramatically different mechanism than adverse events from cytotoxic chemotherapy. Although the presenting symptoms may be similar, understanding the mechanism of action of immune checkpoint inhibitors, oncolytic viral therapies, and CAR T-cell therapy lays the groundwork for understanding the toxicity profiles and the different approaches to reverse or minimize their impact.2 One analogy used to explain challenging immunologic concepts and the mechanism of action of these drugs is to equate the patient’s immune system to a car. “Depressing the accelerator (equivalent to activating T cells) is necessary for the car to move forward (equivalent to a productive immune response against the tumor).” Through this analogy, patients tend to understand the drug’s mechanism of action better and are often encouraged by the idea that their own body is fighting their cancer.20 Nurses play essential roles in assessing patient knowledge, understanding their treatment options, and providing support as patients consider these options. Forming strong relationships with patients and their caregivers can facilitate open and honest communication. It is important to stress that new symptoms must always be communicated to the practitioner. This is a vital teaching point for patients who may be hesitant to report a change for fear that treatment may be discontinued. They need to understand continuation of treatment with an associated side effect may result in more severe toxicity and treatment may be delayed but not discontinued.3 Finally, patients should be counseled that immune-related adverse events (irAE) may occur at any time after initiation of treatment and even months later.3 Strategies for Patient Education Verbal instruction is the initial step in patient education.21 Verbal instruction should never be the sole source of patient education and should be accompanied with educational guides such as written instructions.22 Instructional guides must specify and include when and how to report any symptoms. If a patient appears to be struggling with content, the nurse should provide the patient with shorter, segmented education before continuing onto another topic.21 Caregivers should be included in the educational process because they will support patients through their treatment course and are a reliable factor to promote quality patient education. This allows the patient to follow along with the verbal instruction. The teach-back technique of delivering patient education is an effective method to confirm if individuals have successfully retained information. This method aids the nurse in evaluating the level of patient comprehension on educational instructions by having the patient repeat back what was taught in his/her own words.23 For example, the nurse could ask the patient to reiterate step by step what
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M. Lasa-Blandon et al. / Seminars in Oncology Nursing 00 (2019) 150933
to do if diarrhea occurs. This will ensure education has been effective and provide opportunities for clarification of misunderstandings. As methods of treatments change, so will methods of education change. For example, telemedicine, Web-based patient portals, and visual applications provide nurses with remote access while increasing communication to further improve patients’ symptom management by increasing the opportunity for educational experiences.24 Individuals residing in rural communities far from health care centers will be able to receive timely management through telemedicine.24 Yet, despite growing opportunities, the nurse must always refer to the learner preferences and consider if the methods are appropriate for the content and the age of the learner. In a technologically advanced health care system, nurses must remain vigilant in knowing how patients are retrieving treatment information. The rise of the Internet has changed how medical knowledge is exchanged between nurses and patients by allowing patients access to various forms of information.25 Patients utilize Internet resources as a method to learn about their disease and treatments.26 They will have access to many social media platforms; but the best and safest source of information is from the health care team. Other reputable sources for obtaining information are directly from the drug manufacturer, organization Web sites, and peerreviewed journals. Patients should be advised against seeking clarification on treatment-related side effects from social media platforms. Implication for Nursing Practice Patients require ongoing education to their clinical needs.4 It is a critical role of the nurse to provide individualized patient education that includes consideration of barriers and methods of learning. Recognition of irAEs by the patient and caregiver will allow early and prompt intervention of irAE, which is important for successful outcomes and continuation of therapy.22 Ignored symptoms associated with immunotherapy can have disastrous consequences for the patient’s health, including permanent disability and potential life-threatening outcomes.27 Nurses must feel competent and committed to providing effective educational opportunities to ensure safe and quality patient care delivery.28 Research continues in the field of oncology with the ongoing discovery of new therapies. As new therapies emerge, nurses are at the forefront of continuously educating patients and caregivers while providing holistic and compassionate care. References 1. Farkona S, Diamandis EP, Blasutig IM. Cancer immunotherapy: the beginning of the end of cancer? BMC Med. 2016;14:73.
2. Tariq SM, Haider SA, Hasan M, et al. Chimeric antigen receptor T-cell therapy: a beacon of hope in the fight against cancer. Cureus. 2018;10:e3486. 3. McGettigan S, Rubin KM. PD-1 inhibitor therapy: consensus statement from the faculty of the Melanoma Nursing Initiative on Managing Adverse Events. Clin Oncol Nurs. 2017;21:42–51. 4. Blevins S. The art of patient education. MEDSURG Nurs. 2018;27:401–402. 5. Strupeit S, Buß A, Dassen T. Effectiveness of nurse-delivered patient education interventions on quality of life in outpatients: a systematic review. Appl Nurs Res. 2013;26:232–238. 6. Valenti R. Chemotherapy education for patients with cancer: a literature review. Clin J Oncol Nurs. 2014;18:637–640. 7. McConville H, Harvey M, Callahan C, Motley L, Difilippo H, White C. CAR T-cell therapy effects: review of procedures and patient education. Clin J Oncol Nurs. 2017;21:E79–E86. 8. Daily JA, Landis BJ. The journey to becoming an adult learner: From dependent to self-directed learning. J Am Coll Cardiol. 2014;64:2066–2068. 9. Loeng S. Various ways of understanding the concept of andragogy. Cogent Educ. 2018:1. 10. Beagley L. Educating patients: understanding barriers, learning styles, and teaching techniques. J Perianesthesia Nurs. 2011;26:331–337. 11. Reliasmedia.com. (2019). TJC proposing new cultural sensitivity standards. [online] Available at: https://www.reliasmedia.com/articles/113826-tjc-proposing-newcultural-sensitivity-standards. [Accessed 21 Aug. 2019]. 12. Yilmaz M, Toksoy S, Direk ZD, Bezirgan S, Boylu M. Cultural sensitivity among clinical nurses: a descriptive study. J Nurs Scholar. 2017;49:153–161. 13. Mann K. Education and health promotion for new patients with cancer: a quality improvement model. Clin J Oncol Nurs. 2011;15:55–61. 14. Karliner LS, Hwang ES, Nickleach D, Kaplan CP. Language barriers and patient-centered breast cancer care. Patient Educ Couns. 2011;84:223–228. 15. Juckett G, Unger K. Appropriate use of medical interpreters. Am Fam Phys. 2014;90:476–480. 16. Locatis C, Williamson D, Gould-Kabler C, et al. Comparing in-person, video, and telephonic medical interpretation. J Gen Intern Med. 2010;25:345–350. 17. Jones EG, Boyle JS. Working with translators and interpreters in research: lessons learned. J Transcult Nurs. 2011;22:109–115. 18. Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68:153–165. 19. Fessele K. Financial toxicity: management as an adverse effect of cancer treatment. Clin J Oncol Nurs. 2017;21:762–764. 20. Ledezma B, Heng A. Real-world impact of education: treating patients with ipilimumab in a community practice setting. Cancer Manag Res. 2013;6:5–14. 21. Fitzgerald C. Approaches to patient education in managing adverse events of ipilimumab. Cancer Nurs Pract. 2017;16:20. 22. Gordon R, Kasler MK, Stasi K, et al. Checkpoint inhibitors: common immunerelated adverse events and their management. Clin J Oncol Nurs. 2017;21(suppl 2):45–52. 23. Tamura-Lis W. Teach-back for quality education and patient safety. Urol Nurs. 2013;33:267. 24. Cannon C. Telehealth, mobile applications, and wearable devices are expanding cancer care beyond walls. Semin Oncol Nurs. 2018;34:118–125. 25. Tonsaker T, Bartlett G, Trpkov C. Health information on the internet: gold mine or minefield? Can Fam Physician. 2014;60:407–408. 26. Laugesen J, Hassanein K, Yuan Y. The impact of internet health information on patient compliance: a research model and an empirical study. J Med Internet Res. 2015;17:e143. 27. Wiley K, LeFebvre KB, Wall L, et al. Immunotherapy administration: Oncology Nursing Society recommendations. Clin J Oncol Nurs. 2017;21:5–7. 28. Fereidouni Z, Sabet-Sarvestani R, Hariri G, Kuhpaye SA, Amirkhani M, Kalyani MN. Moving into action: the master key to patient education. J Nurs Res. 2019;27:1–8.
Contents lists available at ScienceDirect
Seminars in Oncology Nursing journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing
Patient Education Issues and Strategies Associated With Immunotherapy Marlon Lasa-Blandon, MSN, RN, OCNÒ ,*, Kristen Stasi, BSN, RN, OCNÒ , Ashley Hehir, BSN, RN, OCNÒ , Erica Fischer-Cartlidge, DNP, CNS, CBCNÒ , AOCNSÒ Memorial Sloan Kettering Cancer Center, New York, NY
A R T I C L E
I N F O
Keywords: Immunotherapy Education Nursing Educational barriers Adult learning
A B S T R A C T
Objective: To provide education strategies to health care providers caring for patients receiving immunotherapy and who are managing the various potential adverse events related to these treatments. Data Sources: Peer-reviewed literature. Conclusion: Delivering patient education on immunotherapy based on a thorough educational needs assessment and identification of learning barriers may contribute to effective patient outcomes and patient safety. Implications for Nursing Practice: It is a critical role of the nurse to educate and empower patients and caregivers with the ability to identify early signs of impending toxicities related to immunotherapy regimens. With continuous learning and clinical experience, oncology nurses are at the forefront for providing highquality immunotherapy education to patients and caregivers. © 2019 Elsevier Inc. All rights reserved.
Introduction From inception, immunotherapy had minimal social impact and awareness, yet with recent discoveries in oncology, these drugs have revolutionized the use of a new modality for cancer care.1 Many adult oncology patients require complex care, which is heightened as new treatments with different management strategies, like immunotherapy, are added. With this, these new therapies have resulted in new challenges for nurses in providing patient and caregiver education. Traditional oncology treatment frequently relied on chemotherapy agents for disease management that has had a side-effect profile and management process that has been largely stable for decades. Immunotherapy works by activating the immune system to recognize cancer. Treatment modalities can range from checkpoint inhibitors to oncolytic viral therapies to chimeric antigen receptor (CAR) T-cell therapy. Checkpoint Inhibitors activate the immune system to recognize cancer cells but can attack normal tissues, causing autoimmune disorders such as colitis, pneumonitis, and dermatitis. In comparison, CAR T-cell therapy can cause cytokine release syndrome that may manifest as hypotension, fever, and dyspnea.2 CAR T-cell therapy may also cause neurotoxicity in patients with B-cell malignancies.2 The side-effect profile is vastly different from chemotherapy, as is their management. Nursing interventions enable early recognition and intervention of adverse events possible and support a continuation of treatment post resolution.3 The heart of toxicity management begins with a nurse’s ability to provide patient education. * Address correspondence to: Marlon Lasa-Blandon, MSN, RN, OCNÒ , Nursing Professional Development Specialist, Memorial Sloan Kettering Cancer Center, 1233 York Ave., SR-22, New York, NY 10065. E-mail address: [email protected] (M. Lasa-Blandon). https://doi.org/10.1016/j.soncn.2019.08.012 0749-2081/© 2019 Elsevier Inc. All rights reserved.
Patient education is one of the most important competencies offered to patients by nurses.4 Patient education is defined as the training and counseling of patients.5 In oncology specifically, a review by Valenti6 reported that patient education before first treatments has been shown to reduce anxiety when it includes content related to treatment and side-effect management. Through patient teaching, knowledge is exchanged and patients become active members in participation of their health care.4 Oncology nurses treat a diverse group of patients with different levels of health literacy. Therefore, nurses must use specific strategies to ensure effective patient education and methods that are individualized to the patient’s level of health literacy and preferred method of teaching. The oncology nurse must comprehend how to teach and identify individual patient barriers. These aspects will have a direct impact on the success of toxicity management for the oncology patient. For patients receiving immunotherapy, the nurse provides unique toxicity management through continued patient education on side effects and early recognition of symptoms.7 By deepening the understanding of potential toxicities, patients will acquire adequate tools essential for managing adverse events. This article will discuss evidence-based assessments and techniques for the delivery of patient education in the setting of immunotherapy treatment for adult patients.
Principles of Andragogy Andragogy is defined as “the art and science of helping adults learn.”8 In the context of this article, the principles of learning and techniques for teaching are focused on the adult learner receiving immunotherapy treatments and/or the care giver. One of the most influential educators to have contributed to the development of
ARTICLE IN PRESS 2
M. Lasa-Blandon et al. / Seminars in Oncology Nursing 00 (2019) 150933 Table 1 Knowles’ principles of adult learning in action. Knowles’ Principles of Adult Learning
Examples in Action
Self-concept and self-directed: Adults should be involved in the content and process of learning9
Ask patients what their preferred learning method is Offer a variety of learning tools (reading materials, videos) Ask the patient for feedback and understanding on the material being presented Compare treatment of side effects from previous standard-of-care therapy and how these are managed differently while on immunotherapy: “It is important to note that potential side effects on this new treatment are treated differently. If you developed diarrhea while on chemotherapy, we’d prescribe XYZ medication. If you develop diarrhea while on immunotherapy treatment, XYZ medication would not work and a different treatment to address the diarrhea must be started. You must call the office immediately if diarrhea develops while on this new treatment.” Discuss how immunotherapy treatment can impact the patient’s life and work balance Recommend a support group for patients and caregivers Share other patient clinical experiences while maintaining privacy Education on immunotherapy should be continuous, providing the patient with time to learn Use the teach-back method Present a problem-solving scenario to the patient and have them share how they would handle it. For example, “You received your last dose of immunotherapy a week ago and noticed a diffused rash to your arms and legs that presented overnight. What is the first thing you should do?”
Use previous experiences: Adults have a large reservoir of experiences, utilize these to help them learn9
Adults are practical learners: The content being taught should illicit issues related to their work and personal life9 Centralize learning on solving problems v memorizing content9
andragogy was Malcolm Knowles.8 His theory of andragogy was based on four principles:
1. Adults need to be involved in the planning and evaluation of their teachings; 2. Adults utilize past experiences to help them learn; 3. Adults are engaged by teachings that have immediate relevance to their social roles and life; and 4. Adult learning is problem-centered rather than contentoriented.9
In the setting of educating adult patients receiving immunotherapy treatments, strong considerations should be given to their readiness to learn and ability to effectively apply these new teachings to their care. Although considered a standard of care in several disease type settings, immunotherapy treatments and guidelines are still new to patients, caregivers, and nurses. It is critical for nurses to comprehend the risks and treatment plans established to care for patients on immunotherapy modalities and how these differ from other standards of care. As educators, nurses should establish effective teaching platforms by applying Knowles’ principles of andragogy to their patient populations. Table 1 lists the principles and provides examples on how to apply them when educating patients receiving immunotherapy treatments. Effective teachings of immunotherapy modalities are a continuous collaboration between the nursing team and patient/caregiver.
have more than one preferred learning style and incorporating these will produce better teaching outcomes.
Barriers to learning Part of the assessment before initiating education must be the identification of potential or actual barriers to learning. Barriers to learning can be related to physical and environmental factors, language and culture, and health literacy.10 When educating patients, consider physical barriers. Examples of physical barriers include increased age, decreased visual and audio clarity, altered mental status because of ailments or drug interventions, decline in cognitive capacity, memory and comprehension of certain abstracts, pain, and anxiety from starting a new treatment regimen.10 Environmental barriers must also be addressed. These include evaluating the lighting in the room, the level of background noise, and the temperature in the room, which may all interfere with the patients’ learning experience.10 These environmental barriers may be challenging to address because of limited access to control lighting, temperature, and noise.10 To overcome the barrier of language and culture when educating patients, nurses must be culturally competent. The Joint Commission emphasizes the importance of cultural sensitivity and competency in the health care setting because clinicians who are sensitive to the preferences of patients based on their culture, spirituality, and ethnicity provide a higher level of quality care.11 Health care institutions Table 2 Various learning styles: teaching tools and strategies.10
Pre-Education Assessments Learning preferences The preferred method of learning is individualized and should be highly regarded before implementing immunotherapy patient teaching. Preferred and effective individualized learning styles are developed in childhood and continue throughout adulthood.10 Before initiating immunotherapy education, the nurse should assess the patients’ preferred learning style because this is essential for effective teaching and memory retention.10 Learning styles include visual, auditory, read/write, and kinesthetic. Based on the learning preferences, different strategies should be used for delivering education (see Table 2). It is important for the nurse to consider that patients may
Learning Styles
Teaching Tools and Strategies
Visual learner
Visual aids Pictures Graphs Videos Tablets Audio tapes Rephrase important elements Listening to verbal instructions Provide written material Encourage note taking Utilize various learning styles Provide hands-on learning, if applicable Return demonstration “Teach-back” method
Auditory learner
Read and/or write learner Kinesthetic learner
ARTICLE IN PRESS M. Lasa-Blandon et al. / Seminars in Oncology Nursing 00 (2019) 150933
are required to demonstrate cultural competency in the care provided. Thus, nurses should be aware of their cultural biases and educate themselves on the cultural perspectives of the patients they provide care to. Patients from a multicultural environment rely on their beliefs and traditions (ie, some religions regulate the individuals clothing style, dietary patterns, and notions that diseases come from God12) when making decisions about their health. This can greatly impact their cancer care.13 This may also impact how information is delivered and how the patient wants to be involved in the education experience. Language is a barrier that must be assessed before providing education about immunotherapy treatments and immune-related side effects and how they differ from prior treatments that may have been received, such as chemotherapy. The patient assessment should also evaluate whether an interpreter or translation service is needed. Karliner et al14 investigated physicians’ experiences communicating with patients with limited English proficiency. Those who used the service of a professional interpreter were able to have a better discussion of the risk and benefits of treatment with their patients. Some strategies to consider when using a professional interpreter while educating the patient and caregiver include: allowing extra time for the visit; seat the interpreter next to or slightly behind the patient; speak directly to the patient and not the interpreter; ask only one question at a time; avoid acronyms, jargon, or humor; use the “teach back” method (having the patient or caregiver being educated express in their own words what was taught to them) to validate comprehension.15 Research shows having accessibility to various interpreter methods (eg, in-person, telephone, or video conference) to use with patients who are non-English speakers can improve the patient and health care team encounter.16 In a quasi-randomized control study comparing in-person, video, and telephone medical interpretation, encounters with in-person interpreters were rated higher by the health care team and interpreters, while patients rated all three methods the same.16 Utilizing trained interpreters is linked to improved patient satisfaction and utilization and compliance to health care, including screening and filling medications, while reducing unnecessary testing.16 Although the terms ”translator” and ”interpreter” are often used interchangeably, there are differences between the two. According to Jones and Boyle,17 a translator changes written text into another language, while an interpreter listens to a spoken language and changes it into another language. When developing a plan to educate patients about immunotherapy, an assessment of the patients’ cultural values and beliefs must also be performed.10 Patient education of immunotherapy that incorporates cultural values and practices pave the way for compliance and positive patient outcomes. Another factor to consider with patient education is time. In the fast-paced world of nursing, finding time to devote to educating patients and caregivers is often a challenge.10 It is important for nurses to anticipate the patient and caregiver’s educational needs and effectively manage their time. Financial Considerations Financial toxicity is a term used in the discussion of cancer drugs given the high price of newer classes of therapies, such as immunotherapy. Although cancer drugs are often the key to progression-free survival (if not overall survival) for a patient with cancer, their use may subject the patient to extreme financial burden and distress.18 Financial burden is also an important factor to assess when reviewing education with patients. Concerns about finances can affect a patient’s ability to focus on learning and may also impact medication adherence. Proactively addressing these issues can be a preventative measure. In addition, oncology nurses can help to ensure that patients are aware of educational and financial resources for their therapies and how to access such resources. For example, most
3
pharmaceutical companies have programs to defer costs and patients can apply to receive financial assistance for these costly immunotherapy treatments.19 Immunotherapy Education Immunotherapy may or may not be first line of therapy for patients. Treatment options are individualized by the type and stage of the cancer. For patients receiving immunotherapy as their second or third line of therapy and those receiving it as first line, it is equally important for patients and caregivers to understand the differences between cytotoxic chemotherapy and immunotherapy. Cytotoxic drugs interfere with cell division and DNA synthesis, while immunotherapy targets the induction of anticancer immune responses. Efficacy of cytotoxic chemotherapy depend on tumor shrinkage, whereas in patients receiving immunotherapy, metastasis may grow or new lesions may even develop before there is a decline in total tumor burden because of the infiltration of lymphocytes into tumors. An important teaching point when educating patients on immunotherapy is that side effects associated with these therapies result from a dramatically different mechanism than adverse events from cytotoxic chemotherapy. Although the presenting symptoms may be similar, understanding the mechanism of action of immune checkpoint inhibitors, oncolytic viral therapies, and CAR T-cell therapy lays the groundwork for understanding the toxicity profiles and the different approaches to reverse or minimize their impact.2 One analogy used to explain challenging immunologic concepts and the mechanism of action of these drugs is to equate the patient’s immune system to a car. “Depressing the accelerator (equivalent to activating T cells) is necessary for the car to move forward (equivalent to a productive immune response against the tumor).” Through this analogy, patients tend to understand the drug’s mechanism of action better and are often encouraged by the idea that their own body is fighting their cancer.20 Nurses play essential roles in assessing patient knowledge, understanding their treatment options, and providing support as patients consider these options. Forming strong relationships with patients and their caregivers can facilitate open and honest communication. It is important to stress that new symptoms must always be communicated to the practitioner. This is a vital teaching point for patients who may be hesitant to report a change for fear that treatment may be discontinued. They need to understand continuation of treatment with an associated side effect may result in more severe toxicity and treatment may be delayed but not discontinued.3 Finally, patients should be counseled that immune-related adverse events (irAE) may occur at any time after initiation of treatment and even months later.3 Strategies for Patient Education Verbal instruction is the initial step in patient education.21 Verbal instruction should never be the sole source of patient education and should be accompanied with educational guides such as written instructions.22 Instructional guides must specify and include when and how to report any symptoms. If a patient appears to be struggling with content, the nurse should provide the patient with shorter, segmented education before continuing onto another topic.21 Caregivers should be included in the educational process because they will support patients through their treatment course and are a reliable factor to promote quality patient education. This allows the patient to follow along with the verbal instruction. The teach-back technique of delivering patient education is an effective method to confirm if individuals have successfully retained information. This method aids the nurse in evaluating the level of patient comprehension on educational instructions by having the patient repeat back what was taught in his/her own words.23 For example, the nurse could ask the patient to reiterate step by step what
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to do if diarrhea occurs. This will ensure education has been effective and provide opportunities for clarification of misunderstandings. As methods of treatments change, so will methods of education change. For example, telemedicine, Web-based patient portals, and visual applications provide nurses with remote access while increasing communication to further improve patients’ symptom management by increasing the opportunity for educational experiences.24 Individuals residing in rural communities far from health care centers will be able to receive timely management through telemedicine.24 Yet, despite growing opportunities, the nurse must always refer to the learner preferences and consider if the methods are appropriate for the content and the age of the learner. In a technologically advanced health care system, nurses must remain vigilant in knowing how patients are retrieving treatment information. The rise of the Internet has changed how medical knowledge is exchanged between nurses and patients by allowing patients access to various forms of information.25 Patients utilize Internet resources as a method to learn about their disease and treatments.26 They will have access to many social media platforms; but the best and safest source of information is from the health care team. Other reputable sources for obtaining information are directly from the drug manufacturer, organization Web sites, and peerreviewed journals. Patients should be advised against seeking clarification on treatment-related side effects from social media platforms. Implication for Nursing Practice Patients require ongoing education to their clinical needs.4 It is a critical role of the nurse to provide individualized patient education that includes consideration of barriers and methods of learning. Recognition of irAEs by the patient and caregiver will allow early and prompt intervention of irAE, which is important for successful outcomes and continuation of therapy.22 Ignored symptoms associated with immunotherapy can have disastrous consequences for the patient’s health, including permanent disability and potential life-threatening outcomes.27 Nurses must feel competent and committed to providing effective educational opportunities to ensure safe and quality patient care delivery.28 Research continues in the field of oncology with the ongoing discovery of new therapies. As new therapies emerge, nurses are at the forefront of continuously educating patients and caregivers while providing holistic and compassionate care. References 1. Farkona S, Diamandis EP, Blasutig IM. Cancer immunotherapy: the beginning of the end of cancer? BMC Med. 2016;14:73.
2. Tariq SM, Haider SA, Hasan M, et al. Chimeric antigen receptor T-cell therapy: a beacon of hope in the fight against cancer. Cureus. 2018;10:e3486. 3. McGettigan S, Rubin KM. PD-1 inhibitor therapy: consensus statement from the faculty of the Melanoma Nursing Initiative on Managing Adverse Events. Clin Oncol Nurs. 2017;21:42–51. 4. Blevins S. The art of patient education. MEDSURG Nurs. 2018;27:401–402. 5. Strupeit S, Buß A, Dassen T. Effectiveness of nurse-delivered patient education interventions on quality of life in outpatients: a systematic review. Appl Nurs Res. 2013;26:232–238. 6. Valenti R. Chemotherapy education for patients with cancer: a literature review. Clin J Oncol Nurs. 2014;18:637–640. 7. McConville H, Harvey M, Callahan C, Motley L, Difilippo H, White C. CAR T-cell therapy effects: review of procedures and patient education. Clin J Oncol Nurs. 2017;21:E79–E86. 8. Daily JA, Landis BJ. The journey to becoming an adult learner: From dependent to self-directed learning. J Am Coll Cardiol. 2014;64:2066–2068. 9. Loeng S. Various ways of understanding the concept of andragogy. Cogent Educ. 2018:1. 10. Beagley L. Educating patients: understanding barriers, learning styles, and teaching techniques. J Perianesthesia Nurs. 2011;26:331–337. 11. Reliasmedia.com. (2019). TJC proposing new cultural sensitivity standards. [online] Available at: https://www.reliasmedia.com/articles/113826-tjc-proposing-newcultural-sensitivity-standards. [Accessed 21 Aug. 2019]. 12. Yilmaz M, Toksoy S, Direk ZD, Bezirgan S, Boylu M. Cultural sensitivity among clinical nurses: a descriptive study. J Nurs Scholar. 2017;49:153–161. 13. Mann K. Education and health promotion for new patients with cancer: a quality improvement model. Clin J Oncol Nurs. 2011;15:55–61. 14. Karliner LS, Hwang ES, Nickleach D, Kaplan CP. Language barriers and patient-centered breast cancer care. Patient Educ Couns. 2011;84:223–228. 15. Juckett G, Unger K. Appropriate use of medical interpreters. Am Fam Phys. 2014;90:476–480. 16. Locatis C, Williamson D, Gould-Kabler C, et al. Comparing in-person, video, and telephonic medical interpretation. J Gen Intern Med. 2010;25:345–350. 17. Jones EG, Boyle JS. Working with translators and interpreters in research: lessons learned. J Transcult Nurs. 2011;22:109–115. 18. Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68:153–165. 19. Fessele K. Financial toxicity: management as an adverse effect of cancer treatment. Clin J Oncol Nurs. 2017;21:762–764. 20. Ledezma B, Heng A. Real-world impact of education: treating patients with ipilimumab in a community practice setting. Cancer Manag Res. 2013;6:5–14. 21. Fitzgerald C. Approaches to patient education in managing adverse events of ipilimumab. Cancer Nurs Pract. 2017;16:20. 22. Gordon R, Kasler MK, Stasi K, et al. Checkpoint inhibitors: common immunerelated adverse events and their management. Clin J Oncol Nurs. 2017;21(suppl 2):45–52. 23. Tamura-Lis W. Teach-back for quality education and patient safety. Urol Nurs. 2013;33:267. 24. Cannon C. Telehealth, mobile applications, and wearable devices are expanding cancer care beyond walls. Semin Oncol Nurs. 2018;34:118–125. 25. Tonsaker T, Bartlett G, Trpkov C. Health information on the internet: gold mine or minefield? Can Fam Physician. 2014;60:407–408. 26. Laugesen J, Hassanein K, Yuan Y. The impact of internet health information on patient compliance: a research model and an empirical study. J Med Internet Res. 2015;17:e143. 27. Wiley K, LeFebvre KB, Wall L, et al. Immunotherapy administration: Oncology Nursing Society recommendations. Clin J Oncol Nurs. 2017;21:5–7. 28. Fereidouni Z, Sabet-Sarvestani R, Hariri G, Kuhpaye SA, Amirkhani M, Kalyani MN. Moving into action: the master key to patient education. J Nurs Res. 2019;27:1–8.