Landmark Survey Illustrates Frontier Cancer Care Needs for Rural and Frontier Patients

A first-ever survey conducted by Huntsman Cancer Institute at the University of Utah (the U) researchers reveals that residents in frontier areas of the Mountain West face significant barriers to health care. The Community Health Assessment Survey (CHAS) is the first of its kind to focus solely on patients in rural and frontier areas. Rural counties have fewer than 100 people per square mile while frontier areas have seven people or less per square mile.

The team, led by Tracy Onega, PhD, senior director of population sciences at Huntsman Cancer Institute, and professor of population sciences at the U, found that most people living in rural and frontier counties know little to nothing about cancer clinical trials, considered to be the standard of cancer care by the American Society for Clinical Oncology. Also, they discovered that one in three people surveyed can’t afford medical care. A total of 1,700 people participated in the study. Prior attempts by other groups to survey rural and frontier residents yielded very limited participation. Thus, this study represents the first major study of attitudes and insights of rural and frontier residents.

Reducing distance as a health care disparity is a major focus at Huntsman Cancer Institute. This unique data set helps clinicians to better understand how to best help patients like Gordon Sorensen, who runs heavy machinery and lives with his wife in Swan Valley, Idaho, tucked between the Snake River and the Grand Tetons.

“We are living the good life here,” says Sorensen. “I’m happiest in the middle of nowhere.”

Sorensen was diagnosed with follicular lymphoma in 2015.

During his treatment, doctors noticed a small spot on his right kidney. Sorensen had been experiencing back pain, which he initially dismissed until he woke up with numbness from his chest down. An MRI showed a cancerous lesion had eaten away at his upper vertebrae near his shoulder blades. The spot on his kidney had grown through his artery and traveled through his bloodstream to his back. He was immediately flown to Huntsman Cancer Institute for surgery.

As the National Cancer Institute-designated comprehensive cancer center for the Mountain West, Huntsman Cancer Institute brings cancer prevention, research, education, and care to people like Sorenson who live in Utah, Idaho, Montana, Nevada, and Wyoming. A large portion of those states are rural and frontier.

“There are unique benefits and challenges when you live in a rural or frontier area,” says Onega. “This data helps us measure how we are doing to meet those needs.”

Onega and her team also found that:

• Two out of three people (68%) surveyed are not aware of programs to help pay for medical costs.

• Nearly three out of four (74%) rural residents are concerned about them or their loved ones getting cancer.

• Only 34% of these residents believe they have access to necessary medical specialists.

• More than one in three (37%) say they had difficulty accessing cancer screenings.

• Over half (65%) say that increasing the number of visiting specialists would be a key way to improve access to care.

Other national surveys have limited reach to those living in more remote areas. This leads to underrepresentation in these national datasets, according to Onega.

“These findings underscore the importance of access for our patients,” says Onega. “Their insights will help us develop ways to improve cancer care in the communities we serve.”

Once stable, Sorensen traveled back and forth from his home in Swan Valley to Salt Lake City every three weeks for kidney cancer treatment.

“It’s a long day of traveling, especially when you are not feeling well,” says Sorensen. “We’ve had times where we left our house at three o’clock in the morning, drove to Salt Lake, went to appointments all day, and then drove home. It amounts to about 14 hours.”

Doctors treated Sorenson’s slow-moving and common type of non-Hodgkin lymphoma with radiation and it “hasn’t given me a minute’s trouble since then,” explains Sorensen.

Sorensen echoes the study’s findings and has seen, firsthand, the impact that lack of access to care can have on those diagnosed with cancer. He’s seen many community members struggle to travel to their appointments.

“It doesn’t have to be like this. People need to be informed about what they can do about cancer,” says Sorensen.

Huntsman Cancer Institute partnered with the Wyoming Survey & Analysis Center for this survey. This study was supported by the National Institutes of Health/National Cancer Institute including P30 CA02014 and Huntsman Cancer Foundation.

_{About Huntsman Cancer Institute at the University of Utah}

Huntsman Cancer Institute at the University of Utah is the National Cancer Institute-designated Comprehensive Cancer Center for Utah, Idaho, Montana, Nevada, and Wyoming. With a legacy of innovative cancer research, groundbreaking discoveries, and world-class patient care, we are transforming the way cancer is understood, prevented, diagnosed, treated, and survived. Huntsman Cancer Institute focuses on delivering the highest standard of care and the most advanced treatments, ensuring world-class cancer care is available to all communities in the area we serve. We have more than 300 open clinical trials and 250 research teams studying cancer at any given time. More genes for inherited cancers have been discovered at Huntsman Cancer Institute than at any other cancer center. Our scientists are world-renowned for understanding how cancer begins and using that knowledge to develop innovative approaches to treat each patient’s unique disease. Huntsman Cancer Institute was founded by Jon M. and Karen Huntsman.