CRANBURY, NJ—When a lung cancer diagnosis is made, the first thing that nearly every individual and their loved ones want are 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+).
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. This program is supported by funding from Takeda Oncology.
“Our vision is to engage, inform, and empower these newly diagnosed patients,” explains AONN+ member and project lead Cheryl Bellomo, MSN, RN, OCN, ONN-CG, Oncology Nurse Navigator, Intermountain Cancer Center, Cedar City Hospital, Cedar City, UT. “Anxiety and fear, while common in the initial phases of a diagnosis and treatment, can be barriers to understanding, coping, and self-care decisions. Research has shown that receiving effective, evidence-based information regarding diagnosis and treatment during this stressful time is very beneficial in alleviating stress and giving the patient a sense of control. When this happens, quality of life from point of diagnosis to treatment is improved.”
To develop this library, AONN+ has partnered with Takeda Oncology and some of the country’s leading patient advocacy organizations for lung cancer, including Addario Lung Cancer Foundation, Lung Cancer Alliance, LUNGevity, National Minority Quality Forum, and Patient Advocate Foundation.
“AONN+ is working closely with these groups to pull resources and identify the information that demonstrates best practices,” says Bellomo. “It’s important to all of us that we move lung cancer care out of the silos in which it has existed and get everyone on the same page. That’s how you advance patient care and outcomes.”
Bellomo shares that the CAPE Committee, which consists of 3 AONN+ members and representatives from each of the advocacy groups, conducted an extensive literature review to identify the distinct domains on which this effort would focus; these include physical, psychological, social, and spiritual. The committee then developed 7 modules based on these domains that represent the most prominent areas of concern for oncology patients and their caregivers: physical well-being, self-care, understanding side effects, treatment-related side effects, palliative care, quality of life, mental and physical stress, and symptom alleviation.
“Not every patient will have the same questions or concerns,” she says. “But by organizing information into these modules we hope to make it easier for providers to select and print — or refer patients to — any necessary educational materials.”
Bellomo expects that the lung cancer library will be completed and ready to be piloted at a few select sites by November 2019.
“This is a really exciting opportunity for us to help providers ― from nurses, pulmonologists, and surgeons to medical and radiation oncologists ― empower and educate patients with the information they desire at the time of their greatest need.”
About the Academy of Oncology Nurse & Patient Navigators® (www.aonnonline.org)
The Academy of Oncology Nurse & Patient Navigators, Inc. (AONN+) is the largest national specialty organization dedicated to improving patient care and quality of life by defining, enhancing, and promoting the role of oncology nurses and patient navigators. The organization, which has more than 8200 members, was founded in 2009 to provide a network for all professionals involved and interested in patient navigation and survivorship care services to better manage the complexities of the cancer treatment process.
The Journal of Oncology Navigation & Survivorship® (JONS)(www.jons-online.com) is the official publication of AONN+. It is published 12 times a year and features topics related to patient navigation and survivorship care. JONS offers original research, best practices, interviews, case reports, and study highlights as well as a platform through which navigators can share research and views on navigation and survivorship issues.
CONQUER: the patient voice®magazine (www.conquer-magazine.com) is the AONN+ premier forum for patients with cancer. CONQUER features articles written by and for patients with cancer, survivors, nurse navigators, and other oncology team members. This magazine addresses the issues that patients, their family members, and caregivers face every day in an easy-to-read format. Issues include interviews with patients with cancer, information on access to care, and articles on lifestyle topics such as nutrition, stress management, personal finance, and legal and employer issues. CONQUER also features patient stories that are nominated for the AONN+ Hero of Hope Patient Award, which is presented at the AONN+ Annual Conference. All stories are compiled in a special issue of CONQUER at the end of the year.