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Story written by: Christie Delfanian

Receiving supportive palliative care can help patients diagnosed with advanced cancer and their caregivers, but these programs often do not exist in rural South Dakota.

Two South Dakota State University nursing researchers want to make palliative care more accessible by adapting Project ENABLE, a palliative care intervention developed and tested in rural New Hampshire, Vermont, and Alabama to meet the needs of cancer patients in west central South Dakota. The research project, which will be conducted in partnership with Avera Cancer Institute in Pierre, seeks to ease the cancer burden, particularly among Native Americans whose cancer mortality rates are more than 25% higher than the white population in South Dakota, according to the 2016 South Dakota Cancer Registry.

Assistant professors Sarah Mollman and Brandon Varilek received a two-year, $100,000 Hillman Serious Illness and End-of-Life Emergent Innovation grant to support the research project. They are the first ������Ƶ researchers to receive funding through the HSEI program, which is a partnership between the Rita and Alex Hillman Foundation and Arthur Vining Davis Foundations.

“We want to guide patients through those first tough months of an advanced cancer diagnosis,” Mollman said. An advanced cancer is one that is unlikely to be cured, but can be controlled, sometimes for a long time, and therefore managed like a chronic illness, according to the American Cancer Society. “Treatment can sometimes shrink the cancer, slow its growth, help relieve symptoms and help you live longer.” 

Other research groups have seen positive results with Project ENABLE (educate, nurture and advise before life ends). Patients who participate in the intervention soon after they are diagnosed have a one-year survival rate of 63% with an improved quality of life, while that survival rate decreased to 48% among patients who started the intervention as little as three months later.

Adapting intervention

During Project ENABLE, a coach will have six weekly sessions with the patient followed by monthly check-in calls. The sessions address topics such as symptom management, self-care and communication as well as advance directives and advance care planning.

To adapt the intervention, the researchers will work with Avera Cancer Institute in Pierre to gather feedback from 12 patients, 12 caregivers and 12 health care professionals. What they learn will help them decide whether the coach should be a nurse or a trained layperson and whether the sessions should be in person, on the phone or through telehealth. The feedback will also help them adjust the session content.

“We are going to spend the first year listening,” Mollman said. The ������Ƶ researchers are the first to adapt Project ENABLE to Native American cultures. Pierre’s Avera Cancer Institute draws patients from the Cheyenne River, Lower Brule and Crow Creek Indian reservations. 

“We hope to have an equal split between Native American and non-Native patients,” Varilek said, noting the needs of Native American patients will differ from other rural patients. In particular, sessions that discuss spiritual needs and the legacy patients wish to leave must encompass traditional Native American beliefs.

“It is so important to culturally adapt the intervention. Those adaptations must come from the Native people telling us how they want (the sessions) to look to have the best impact and how they want it delivered,” Mollman said, emphasizing that buy-in from patients and their caregivers is essential. To facilitate this, the researchers plan to consult with a cultural broker who can help bridge the gap between white and Native cultural perspectives.

In addition, the Avera Cancer Institute’s professionals will give the researchers insight on how Project ENABLE will fit into their workflow and which patients they feel can benefit most from the intervention.

Doing more than anticipated

The researchers originally received $50,000 in funding for 18 months, but Mollman was recently notified of the increase in funding and duration of their grant.

“This is huge—it hasn’t really sunken in,” said Varilek, noting they will not only be able to adapt the intervention but also do pilot testing to gauge its potential impact. The data they gather will help them apply for a larger National Institutes of Health grant.

In addition, Mollman and Varilek received a one-year $10,529 grant from ������Ƶ’s Research, Scholarship and Creative Activity Challenge Fund, which will help advance the research. “We want to make sure this intervention works for these rural, underserved populations,” Mollman said.