The CAPE Initiative: Developing Meaningful Educational Materials to Elevate Quality of Life for Patients with Lung Cancer

July 2019 Vol 10, No 7

When a lung cancer diagnosis is made, the first thing that nearly every individual and their loved ones want is answers. What do I do next? How do I tell my children? Will I live?

Making sure that newly diagnosed patients get the answers and information they need in a timely and consistent manner is the goal of a new initiative being spearheaded by the Academy of Oncology Nurse & Patient Navigators (AONN+) and supported by funding from Takeda Oncology.

The Cancer Advocacy & Patient Education (CAPE) initiative aims to create a web-based library of best-practice information that providers in the lung cancer space can give to their patients and caregivers at each point of interaction. Although lung cancer is the initial focus of the initiative, other sites—gastrointestinal, head and neck, etc—will be added in the future.

The editors of the Journal of Oncology Navigation & Survivorship (JONS) recently had the opportunity to speak with CAPE Committee chairs Cheryl Bellomo and Amy Jo Pixley to discuss the creation of CAPE, special considerations for patients with lung cancer, and their evidence-based approach to creating meaningful materials for oncology professionals to disseminate to patients with lung cancer.

JONS Good morning and thank you for meeting with us, ladies. I’d like to begin by asking how the Cancer Advocacy & Patient Education Committee was formed?

Ms Pixley Leaders from the Academy of Oncology Nurse & Patient Navigators (AONN+) acknowledged an unmet patient and caregiver need for reliable educational materials, so we formed the Cancer Advocacy & Patient Education (also known as CAPE) committee to not only educate patients/caregivers on their cancer diagnosis but also to alleviate the distress caused by “waiting”—waiting for testing to occur, waiting for results to be shared, waiting for treatment plans to be developed, etc.

Ms Bellomo Yes, CAPE is an AONN+-driven initiative with funding from Takeda Oncology. We formed a coalition of thoracic nurse navigators from AONN+ and experts from patient advocacy organizations to develop the “best of the best” patient-facing materials and resources.

JONS Who does the CAPE Committee comprise?

Ms Pixley The CAPE committee currently comprises AONN+ leadership council members, thoracic nurse navigators, physicians from the multidisciplinary team, patients, and various cancer advocacy groups to include the GO2 Foundation for Lung Cancer, LUNGevity Foundation, Patient Advocate Foundation, and the National Minority Quality Forum. None of this would be possible without the financial support of Takeda Oncology.

JONS What is the mission of the CAPE initiative?

Ms Bellomo Simply stated, the mission of the CAPE initiative is to improve the patient experience from cancer diagnosis to treatment with personalized education.

JONS To deliver a meaningful product, the committee conducted an extensive literature review. Can you talk about that process and the results of this exercise?

Ms Pixley First, we identified a quality-of-life model to serve as our backdrop and selected the B. Ferrell Quality of Life Model of Care. The committee defined 4 domains of the model—physical well-being, psychological well-being, spiritual well-being, and social well-being. These critical components served as search terms and guided the literature review. Using the PubMed database and a 10-year publication span, 1610 articles were screened, 205 full-text publications were studied for relevance, resulting in 50 applicable full-text articles. Of these, 20 were published within the past 4 years and cover the physical well-being domain as well as the psychological domain most frequently. Twelve of the articles covered multiple domains. Following summation of the literature review, we were able to delineate 7 education modules. Based on our research, we have been able to build robust education modules that address the varying aspects of the cancer journey, including the barriers and challenges plaguing newly diagnosed lung cancer patients.

Ms Bellomo It’s important to note that the barriers and challenges we identified within those domains can have profound effects on patients and their families. Patients and caregivers have critical educational needs during the vulnerable waiting period between diagnosis and treatment. Our research and analysis of the literature provided an evidence base for the development of this integrative education tool to empower patients and their caregivers following a lung cancer diagnosis. From the results of the literature review, 7 modules for education were identified based on the domains that represent the most prominent areas of concern for oncology patients and their caregivers.

JONS We’d like to know more about the CAPE web-based library. When will the first library launch, and how will oncology professionals use it?

Ms Bellomo We are expecting to first conduct a pilot study of the web-based library in 2020. When the web library is finalized, the program will be made available to pulmonology offices, radiation and medical oncology clinics, and navigation programs. When healthcare professionals meet with patients and their caregivers and assess their needs, they will be able to provide personally tailored resources from the modules housed on the web library. The goal of the personalized education is to engage, inform, and empower patients and to reduce distress and improve the experience between diagnosis and treatment and along the cancer journey.

JONS Can you provide examples of the types of resources that will be housed on the web library?

Ms Pixley The 7 modules of the initiative include (1) Understanding Your Diagnosis—provides patients/caregivers with information pertaining to various types of lung cancer, its staging, and a list of questions to ask the healthcare team; (2) Treatment and Clinical Trials—contains information on the various treatment options available, provides an overview on clinical trials and their importance in furthering the science of lung cancer care, and resources relating to quality of life; (3) Self-Care—houses information on side effects related to treatment and self-management tips, resources on nutrition and exercise, and material on palliative care; (4) Coping—focuses on the social and emotional distress witnessed as a result of lung cancer as well as tips for managing stress; (5) Shared Decision-Making—houses tools to aid patients/caregivers in decision-making as well as communication tips when dealing with the healthcare team; (6) Financial—provides information and resources to help deal with financial distress, including dealing with employment issues; and (7) Caregiving—contains information on dealing with the role of caregiver, self-care, communication tips to deal with healthcare providers, coping skills, as well as a segment on helping children/teens deal with a loved one with cancer.

Ms Bellomo The modules are designed to make the time between diagnosis and treatment as productive and meaningful as possible through interactivity and education to meet the patient’s psychosocial needs. The tools and resources of the modules aim to improve communication and shared decision-making about diagnosis, testing, and treatment between the patient, the caregiver, and the cancer treatment team.

JONS Can you talk a little about the psychological aspect of a cancer diagnosis and the related fear and anxiety patients experience?

Ms Bellomo The diagnosis of lung cancer evokes a reaction that can immediately hinder an individual’s and family’s quality of life. Anxiety and fear, while common in the initial phase of a cancer diagnosis and treatment, can be barriers to comprehension, coping, and self-care decisions. Receiving effective evidence-based information regarding diagnosis and treatment during this stressful time is very beneficial in reducing anxiety and regaining a sense of control. When anxiety is lessened, coping is enhanced, and an individual’s needs are met during education, and quality of life is improved during the crucial period from diagnosis to treatment.

Ms Pixley It’s so true that a cancer diagnosis provokes fear and anxiety, even in an era in which advanced cancer has become a chronic disease state. Cancer represents an intense existential distress for patients and those who love and care for them. Our hope is that, through the use of the web-based learning modules, patients and their families will be armed with tools to lessen this burden of distress and be provided with an arsenal of self-help “guides,” if you will. We know from the research that when patients are provided with knowledge, presented in a way they can retain and articulate, they are more engaged in their care and treatment plan. Knowledge is power, and engaging patients early in the education process puts them in control.

JONS In addition to all the expected psychological aspects of a cancer diagnosis, we often hear about a stigma specifically related to a lung cancer diagnosis. Will the web library address this issue?

Ms Pixley The stigma attached to those afflicted with lung cancer is real, impacting every aspect of the lung cancer journey. One of the first questions every healthcare provider will ask when meeting someone suspected of having lung cancer is, “Do you smoke?” There is no other cancer in which our first impulse is to empirically determine the cause—and in the case of lung cancer, place ownership and blame on the individual. This “blame” causes patients to struggle with shame and guilt, social isolation, anxiety, and depression, often delaying medical attention. For those who have never smoked, the battle is equally distressing but may provoke more humiliation and discontentment as family and friends barrage them with questions as to how such a disease could possibly afflict them, if true to their word. As healthcare professionals, we need to be empathetic to their plight, offering nonjudgmental, supportive care.

Ms Bellomo The stigma of lung cancer will be examined in the e-library, and supportive material will be offered to help lessen the personal burden.

JONS Can you talk about the benefits of an engaged, informed, and empowered patient?

Ms Bellomo Evidence of patient-reported outcomes and clinical outcomes show that when patients are informed and educated about their medical condition, their treatment options, treatment, side effect management, and self-care, they are better able to actively participate in shared decision-making, their care, and treatment adherence. This results in a greater patient experience, patient satisfaction, as well as improved clinical outcomes and reduced medical costs by reducing unnecessary emergency department visits and hospital admissions.

JONS We’d like to learn about benefits of delaying treatment for lung cancer until appropriate biomarker testing is complete. Can you speak to this point?

Ms Pixley In an era of personalized medicine, molecular analysis has become the gold standard for identifying treatment options in advanced non–small cell lung cancer. By accurately specifying/characterizing molecular features of the tumor, those afflicted with lung cancer have treatment options available not previously afforded them. Due to the potential side effects caused by chemotherapy, it should only be considered if the patient is too symptomatic to wait for testing results, or if there are no actionable mutations. Knowing the molecular profile of a patient’s tumor up front drives treatment planning, mitigating unnecessary symptoms and side effects to therapy.

JONS Who is the target audience of the CAPE lung cancer web-based library?

Ms Bellomo The target audience is primary care physicians, pulmonologists, medical and radiation oncologists, nurse and patient navigators, and social workers.

JONS Do you plan to expand into other tumor types?

Ms Pixley Yes, there is a plan to expand the CAPE initiative. Once we have worked through some of the practical aspects of the initiative, confirming ease of use, as well as meeting our presumed justification for the program, the plan will be to expand it to other disease sites. At this time, we have been working closely with lung cancer–specific advocacy groups to ensure the educational material is representative of the population needing the information. Moving forward, we will need to engage other disease-specific advocacy groups to guarantee material is pertinent to the respective populations.

JONS Thank you very much for your time today and best of luck with the impending launch of the first CAPE web-based library.

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Last modified: July 10, 2019

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