Cedar City nurse navigator heads national effort to create online database for lung cancer patients

Stock image | Photo by KatarzynaBialasiewicz/iStock/Getty Images Plus, St. George News

CEDAR CITY — Local nurse navigator Cheryl Bellomo has been chosen to lead a team in the creation of a new web-based platform to better educate and care for newly diagnosed lung cancer patients, with hopes to improve outcomes.

The program will be known as the Cancer Advocacy and Patient Education Initiative, or the CAPE Initiative, and is being designed by the Academy of Oncology Nurse and Patient Navigators.

Bellomo, an oncology nurse navigator at the Intermountain Cancer Center in Cedar City and a member of the academy, said that the initiative is designed to deliver a “personalized visual prescription” to patients and patient caregivers based on their individual needs.

The CAPE Initiative will be an online database that health care providers can give newly diagnosed patients access to. It contains evidence-based educational material from many of the leading patient advocacy organizations for lung cancer, including the Lung Cancer Alliance.

“Very big hitters in lung cancer are all joining forces. They’ve all been out there creating great resources and tools for patients, let’s work together and let’s put them in one place,” Bellomo said.

There will be seven modules within the database for patients to explore: Understanding your diagnosis, treatments, self-care, which includes information symptom management, side-effects and nutrition, coping, shared decision making, which discusses how patients should communicate with their health care team to decide on the best treatment for their needs, finances and caregiver and family roles.

Within the modules, there will be information regarding each subject in the form of videos, printed materials, planners and many other types of media for patients to access because everyone learns in a different way, Bellomo said.

Research has shown that receiving effective information regarding their diagnosis and treatment during this stressful period is very beneficial. It helps reduce their anxiety, they regain a sense of control and they’re able to create realistic expectations. That information also allows them to be able to have shared decision making with their health care team, and that can lead to improved outcomes.”

When a patient is first diagnosed with lung cancer, a nurse navigator like Bellomo sits down with them and their caregiver to assess their needs based on four quality of life proponents: Physical, psychosocial, social and spiritual well-being.

They then determine what kinds of barriers the patient has, including transportation issues, insurance, a lack of understanding of their diagnosis, difficulties coping, anxiety, lack of a strong social network or anything else that may hinder them in their treatment. Then they can hand-select information from the database that is relevant to the individual’s needs and share it with them.

We need to really determine the needs of those patients. Any type of barrier within their well-being could hinder them in being able to make decisions that are best for them for their treatment,” Bellomo said.

The team began working on the project in December. Since then, they have developed the module outlines, selected the resources and tools for each module, reviewed the literature to be included and are in the process of building the web-based platform.

They have recently partnered with HealthUnlocked, a worldwide social network that has done similar work in getting health education to patients via a web-based platform.

Before launching the CAPE Initiative, which they hope to do early 2020, they will bring in a focus group of nurse navigators to review the program, and then they will launch a pilot study before expanding it to health care providers nationwide. After that, the team plans to expand the initiative to include other types of cancer.   

“We’re excited. We want to make sure that we as navigators and health care providers are looking to engage, inform and empower newly diagnosed lung cancer patients,” Bellomo said. “Because we know if we’re able to do that we can improve not only their patient experience but hopefully we’ll improve their physical outcome.”

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Twitter: @STGnews | @MikaylaShoup

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