New research shows that patient “navigators” are a valuable resource for American Indians and Alaskan Natives with cancer as they try to overcome barriers to diagnosis and care, and may offer a path to improved treatment outcomes.
The findings, recently published in the Journal of Primary Prevention, are important because American Indians and Alaskan Natives are stricken with cancer at the same rate as non-Hispanic white people but have lower five-year survivorship rates, and are more likely to die of cancer in general.
Indigenous patients in the Pacific Northwest working with a navigator were almost four times more likely to have a definitive diagnosis within a year of an abnormal screening result than patients without a navigator, the research indicated.
In addition, patients in the study praised their navigators’ ability to provide emotional and logistical support throughout the complicated and often-confusing treatment process. A navigator coordinated patients’ care between multiple providers and agencies and helped connect patients to support groups and other resources.
Megan Cahn, a postdoctoral research associate in Oregon State University’s College of Public Health and Human Sciences, was a co-author of the study along with scientists from the Northwest Tribal Epidemiology Center. The center, one of 12 in the nation, collaborates with the region’s tribes on health-related research, surveillance, training and technical assistance.
The patients in the study all received care through tribal community health clinics, which receive funding from the Indian Health Service. The project was part of a larger program by the National Cancer Institute examining the effectiveness of the patient navigator model in populations with sub-optimal cancer outcomes.
“One of the big concerns for tribal populations is that they have lower screening rates,” Megan says. “If you don’t screen, then you don’t detect cancer until someone is showing symptoms. A big part of the program was to see if there was a way to get individuals with an abnormal screening result to get a definitive diagnosis, to shorten that window and get treatment in a timely fashion.
“We found that patients enrolled in a navigator program were 3.6 times more likely to have a definitive diagnosis within a year.”
The researchers also learned that not only was the navigator program measurably effective, the patients liked it – an important indicator of the program’s long-term success potential.
“If the patients don’t find it acceptable, the program won’t continue to work,” Megan says.
A patient navigator was hired by the tribe at each of three tribal clinics in Idaho and Oregon, and researchers interviewed 40 patients for their perceptions of the program. The average age of the participants was 54.4, and 65 percent were female. Thirty-four of the 40 rated the navigator program as “good” or “excellent,” and one added she felt the navigator had saved her life.
In addition to the screening and diagnosis issue, the research found that the main barriers to cancer treatment cited by tribal members were physical and emotional obstacles – symptoms of the cancer itself or side effects from treatment, and “also the emotional response to the diagnosis.”
“There’s a lot of fear and anxiety and shock, and those fears often lead patients to be reluctant to continue with treatment,” Megan says. “Some of them felt like they had received mistreatment or had been misdiagnosed, plus there were financial barriers: the cost of care and a lack of coordination regarding payment for the services.
“Other barriers were concerns around transportation – some people would have to travel several hours to get treatment, and the availability and cost of public transportation were problems. Navigators could help come up with strategies that were effective for addressing these logistical barriers.”
Sometimes a navigator would accompany a patient to an appointment and help the patient understand what the doctor was saying. Navigators also provided direct emotional support as well as referring patients to support groups.
“Patients said they valued that navigators were part of their communities and respected their culture,” Megan says. “It made them feel like the navigators were invested in the community and the patients and their families.”