Engage, Inform, and Empower: The Cancer Advocacy & Patient Education Initiative

November 2019 Vol 10, No 11
Cheryl Bellomo, MSN, RN, HON-ONN-CG, OCN
Oncology Nurse Navigator
Intermountain Cancer Center Cedar City Hospital
Cedar City, Utah
Amy Jo Pixley, MSN, RN, OCN, ONN-CG(T)
Oncology Nurse Navigator, Penn Medicine Lancaster General Health
Danelle Johnston, MSN, RN, HON-ONN-CG, OCN
Senior Vice President, Education, Learning & Innovation
Cancer Support Community

Background: The diagnosis of cancer evokes a life-threatening reaction that can immediately hinder the quality of life (QOL) of an individual and their family. Anxiety and fear, common in the initial phase of cancer diagnosis and treatment, can be barriers to comprehension, coping, and self-care decisions. Receiving effective information regarding diagnosis and treatment during this stressful period is very beneficial in reducing anxiety, regaining a sense of control, and creating realistic expectations.1 When anxiety is lessened, coping is enhanced, and an individual’s needs are met during education, QOL is improved during the crucial period from diagnosis to treatment.

Objective: 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. The objectives are:

  • To make the time between diagnosis and treatment as productive and meaningful as possible through interactivity and education to meet patients’ psychosocial needs
  • To improve communication and shared decision-making around diagnosis, testing, and treatment between the patient, caregiver, and the cancer treatment team
  • To ensure patient understanding of their diagnostic and treatment journey, individualized to their disease state

Methods: To develop this library, AONN+ partnered with Takeda Oncology and a multistakeholder coalition of leading patient advocacy organizations for lung cancer. A predetermined QOL model based on the domains of physical, psychological, social, and spiritual well-being was utilized to determine the needs of patients and their caregivers.2 A comprehensive search of the published literature in the past 10 years was conducted. A total of 1610 articles were screened, 205 full-text publications were reviewed, and 50 relevant articles were identified. Findings from the review and analysis of relevant articles, using the PRISMA model, identified common areas of need/concern for patients with lung cancer and their caregivers.

Results: Based on the identified areas of concern, 7 modules for the integrative education program were outlined, and current best-practice resources and tools were gathered for each of the modules. The 7 modules addressing the physical, psychological, social, and spiritual well-being are: (1) Understanding Your Diagnosis, (2) Treatment & Clinical Trials, (3) Self-Care, (4) Coping, (5) Shared Decision-Making, (6) Financial, and (7) Caregiver & Family Role.

Conclusion: The CAPE program with its web-based platform through Health Unlocked will allow navigators and healthcare providers to deliver a personalized digital prescription to lung cancer patients and caregivers of cultivated, evidence-based, best of the best resources based on their physical, psychological, social, and spiritual well-being needs to make the time between diagnosis and treatment as productive and meaningful as possible.

By providing education, improving communication, shared decision-making, and ensuring patient understanding through interactivity and personalized resources of the CAPE program, navigators and healthcare providers can engage, inform, and empower newly diagnosed lung cancer patients, resulting in reduced distress and an improved patient experience. The education platform will assist the identification of interventions or tools to improve QOL throughout the disease process.


  1. Mann KS. Education and health promotion for new patients with cancer. Clin J Oncol Nurs. 2011;15:55-61.
  2. Fujinami R, Otis-Green S, Klein L, et al. Quality of life of family caregivers and challenges faced in caring for patients with lung cancer. Clin J Oncol Nurs. 2012;16:E210-E220.
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Last modified: May 10, 2021

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