image: University of Tennessee, Knoxville, College of Nursing, Assistant Professor Patricia N. E. Roberson.
Credit: University of Tennessee
October is Breast Cancer Awareness Month, a time to raise awareness of breast cancer and recognize the experiences of those living with and beyond the disease. For many survivors, the challenges do not end when primary treatment is complete. Managing lingering symptoms, including pain associated with ongoing treatment, can affect quality of life and make survivorship more difficult.
At the University of Tennessee, Knoxville, College of Nursing, Assistant Professor Patricia N. E. Roberson is working to address these challenges through a new National Cancer Institute (NCI) award. Her two-year project, “Conquering Pain Together: Family-Based Pain Intervention for Appalachian Breast Cancer Patients Taking Adjuvant Endocrine Therapies (AETs),” explores how family support can help breast cancer survivors better manage pain and improve their quality of life.
The College of Nursing has previously engaged in NCI-related research through a contract but Roberson’s award is the first funded award from NCI received at UT, marking an important milestone for the university’s growing cancer research efforts.
For Roberson, however, the significance of the award extends well beyond the milestone. Her research addresses an important challenge facing breast cancer survivors: how to manage the pain and other symptoms that can linger even after primary cancer treatment has ended.
“This project is really focused on making sure that when you’re in survivorship, you can have the best quality of life as possible,” Roberson said.
A milestone for NCI-funded research at UT Knoxville
NCI is one of 27 institutes within the National Institutes of Health and is the federal government’s principal agency for cancer research. Roberson’s funded award marks an important step in expanding UT’s NCI-funded research and strengthening collaborations focused on improving cancer outcomes and the patient experience.
Roberson’s project brings together researchers and clinical partners from across Tennessee. The study will collaborate with the University of Tennessee Medical in Knoxville as well as the University of Tennessee Health Science Center College of Medicine — Chattanooga and East Tennessee State University to support participant recruitment and extend the research into communities throughout the state.
For a university located at the edge of the Appalachian region, this opportunity to conduct NCI-funded research focused specifically on Appalachian cancer survivorship carries particular significance.
Addressing the challenges of survivorship
Breast cancer treatment has made significant advances, and many patients now live cancer-free for years after completing primary treatment. But survivorship can bring its own challenges.
For patients with estrogen receptor-positive breast cancer, adjuvant endocrine therapies, or AETs, are commonly prescribed following primary treatment to reduce the risk of recurrence and improve overall survival.
These medications work by blocking or reducing the levels of estrogen, which can fuel the growth of certain breast cancers. While AETs are an important part of preventing recurrence, they can also cause side effects including joint pain, muscle aches and increased sensitivity to pain.
For some patients, those symptoms can make continuing treatment difficult.
Roberson’s research is designed to address that challenge through a non-pharmacological approach that focuses on the patient, and the person supporting them.
Conquering pain together
At the center of the study is the idea that patients do not experience pain in isolation.
The intervention will bring breast cancer survivors together with a primary caregiver who is a family member or other significant source of support. The pair will participate in the intervention together and complete research surveys throughout the study.
The primary caregiver does not have to be a spouse or biological family member. Participants may identify a sibling, adult child, friend, daughter-in-law, spouse or another trusted person as their caregiver.
“Family is however you can find it,” Roberson said. “We leave it up to the patients to tell us who that supportive person is for them.”
Together, participants will learn evidence-based strategies for coping with pain and psychological distress. Depending on their preferences, strategies may include meditation, contemplative prayer and other approaches that can help patients manage pain and reduce pain catastrophizing, the cycle of worry and distress that can accompany persistent or recurring pain.
The goal is not necessarily to make pain disappear.
Instead, the researchers hope to provide patients and caregivers with tools to better navigate pain when it occurs, while strengthening communication and support within the relationship.
“When you’re in horrible pain, having somebody who understands that and can be comforting can also help you better cope with the pain experience,” Roberson said.
The intervention also intentionally addresses the well-being of the caregiver. Roberson’s research has shown that stress experienced by family caregivers can contribute to a patient’s pain experience, making support for both members of the pair an important component of the intervention.
“We’re giving them both, the patient and the family member, skills to help them improve coping,” Roberson said. “It’s almost like having someone constantly by your side, a coach or a supportive figure, to help you through the times when the pain is greatest.”
Building on Appalachian strengths
The project’s Appalachian focus is intentional.
While the region faces significant challenges related to cancer outcomes, Roberson believes research in Appalachia should also recognize and build upon the strengths of the communities themselves.
Family relationships are one of those strengths.
“Appalachia so often gets a bad rap,” Roberson said. “One thing that’s always missing is how close-knit our families are and how important that is.”
That perspective is central to the intervention. Rather than treating family support as something that happens alongside cancer care, the project seeks to intentionally incorporate that support into pain management.
The study will also address the geographic realities of Appalachian communities.
The intervention is designed to be delivered through telehealth, allowing participants to take part without routinely traveling to Knoxville.
From pilot study to future impact
The first phase of the project will gather feedback from patients, family caregivers, clinicians and other community stakeholders. Their perspectives will help the research team refine the intervention and ensure that it meets the needs of the people it is intended to serve.
The team will then conduct a pilot trial involving 30 patient-caregiver pairs.
The primary goals of the pilot are to determine whether participants find the intervention acceptable and whether researchers can consistently deliver it.
Those findings could provide the foundation for a larger clinical trial and, ultimately, integration of the intervention into clinical practice.
“If we can demonstrate that people like the study and that we can consistently implement it, the hope is to do a full trial and hopefully improve the lives of more cancer survivors in our region,” Roberson said.
The potential reach of the work extends beyond breast cancer. Roberson and her collaborators, Breast Surgical Oncologist Jillian Lloyd and Medical Oncologist Sarah Jenkins, are also exploring how family-based pain interventions could eventually be adapted for people with other types of cancer and for patients receiving other maintenance therapies with other oncology clinicians at UT Medical.
For UT, the project represents more than a new research award. It signals an opportunity to expand the university’s NCI-funded research while addressing a critical component of cancer survivorship: helping patients live well after treatment.
And for the College of Nursing, the project demonstrates how nursing research can bring together clinical expertise, family science and community partnerships to address complex health challenges.
“Conquering Pain Together” puts patients and the people who support them at the center of the research.