Meeting Hispanic Cancer Survivors’ Unique Needs
Article Summary
- Led by Frank Penedo, Ph.D., Sylvester’s Cancer Survivorship and Supportive Care programs aim to provide holistic patient care.
- The programs tailor interventions based on patients’ needs and cultural backgrounds.
- Dr. Penedo is also leading what will be the most extensive study of Hispanic cancer survivors in the U.S.
Iliana Suarez is an enthusiast about her exercise and nutrition routine.
Her activities aren’t quite those of the typical gym rat, though. Suarez participates in movement and nutrition classes tailored specifically for cancer survivors through programs at Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine.
“Everything they do is to better your health,” said Suarez, a 63-year-old breast cancer survivor from Miami. “I talk about this to people all the time because this is a wonderful program. It’s just been such a blessing.”
Suarez was initially diagnosed and had surgery to remove her tumor at another facility in Miami. She later received radiation treatment at Sylvester, and it was there that she was introduced to the center’s Survivorship and Supportive Care Programs.
Although she’s nearly seven years past treatment for her breast cancer, Suarez doesn’t see her involvement with Sylvester ending any time soon. She loves her exercise classes, where instructors tailor activities for a survivor’s unique needs, and she enjoys getting to meet and talk with other patients and survivors. She’s also working with Sylvester researchers as a patient advocate on an upcoming exercise study in older cancer survivors.
Presenting together with Sylvester’s Director of Cancer Survivorship and Supportive Care, Frank Penedo, Ph.D., Suarez will speak about her experience as a cancer survivor in a webinar Sept. 17 hosted by the National Cancer Institute (NCI) Office of Cancer Survivorship.
Evidence-based Interventions with Cultural Sensitivity
Although the term “survivor” may evoke someone long past their diagnosis and primary treatment like Suarez, physicians and researchers use the term from the moment someone is diagnosed, as guided by the National Cancer Institute, Dr. Penedo said. There’s a growing recognition at Sylvester and other cancer centers that clinicians need to care for an entire patient, not just focus on eliminating their cancer.
That’s why Dr. Penedo and his colleagues take a holistic approach to their work. Survivorship care can range from screening for secondary cancers to managing the treatment-related burden by providing mental health counseling to treating patients’ emotional side effects or lifestyle approaches like exercise.
In South Florida, where many patients are Hispanic or Latino, Dr. Penedo is also conscious of how culture and the social context can influence a person’s perspective and unique journey through cancer care and beyond. Sylvester was the first NCI-designated cancer center to implement clinically validated patient-reported outcomes in Spanish as part of their clinical care, and will soon be launching these same measures in French and Creole. His group has also developed linguistically and culturally adapted stress management interventions for Hispanic or Latino cancer survivors.
“We don’t change the basics and tools provided in the interventions to help survivors cope with cancer since these are evidence-based interventions that have already been tested,” Dr. Penedo said. “But we do take culture and the cultural context into consideration.”
That could look like recognizing some patients have large and close-knit extended families where multiple caregivers may need to be educated on their care. Or it could mean recognizing that some racial and ethnic minorities may have historical or personal reasons to mistrust the medical system and working with them to establish trust.
Integrated Cancer Care
The survivorship team at Sylvester has integrated much of its work into patients’ regular care. As a matter of course, the team members assess patient-reported outcomes at regular appointments and triage them to different care as needed, be it counseling, lifestyle care or additional medical treatments.
This automatic integration has resulted in findings that suggest decreased emergency room visits and hospitalizations among its patients, Dr. Penedo said.
They also have several survivorship wellness clinics that address survivorship challenges that fall outside regular oncology treatments. These clinics provide comprehensive survivorship care plans encompassing all their treatments and follow-up needs.
Around a quarter of Sylvester cancer patients don’t have a primary care provider, so the survivorship team also works to identify general practitioners in the University of Miami Health system for ongoing care and trains those providers on how to best care for cancer survivors.
New Research on Hispanic Cancer Survivors
Many Sylvester survivorship care providers also conduct their own research on cancer survivorship. Dr. Penedo is now leading the first Hispanic cancer survivorship cohort study conducted in the U.S., which is funded by the NCI and called Avanzando Caminos (Leading Pathways). That study, conducted in partnership with Mays Cancer Center at the University of Texas Health Science Center at San Antonio, is currently recruiting 3,000 Hispanic solid-tumor cancer survivors in Florida and Texas, aiming for a diversity of country of origin, socioeconomic status and urban versus rural living environments.
Hispanic cancer patients tend to have worse outcomes than non-Hispanic white patients. The Avanzando Caminos study aims to understand the many factors that may contribute to poorer quality of life and outcomes in this population. They’re gathering information on factors such as stress levels, demographics, social determinants of health, lifestyle behaviors and biological measures such as levels of inflammation.
They hope the data that results from the study will inform new interventions or modifications to existing interventions that can better serve the Hispanic cancer patient community, Dr. Penedo said.
Smaller studies on Hispanic cancer patients have found that the group has lower rates of health insurance than almost any other racial or ethnic group in the U.S., that they tend to be diagnosed at later stages of their diseases and that they have lower rates of screening for cancers like breast and cervical cancers, where early detection is paramount. But none of these studies have had the size or breadth that the team hopes to accrue through the larger, multi-state cohort, which should give them much more detailed information about outcomes for this population.
“There’s enough evidence to tell us that there’s a problem,” Dr. Penedo said. “We just don’t know how big the problem is and how these factors really contribute to it because we haven’t had a big enough or diverse enough sample.”
With his research, however, Dr. Penedo is determined to find solutions.
Tags: cancer survivorship, Dr. Frank Penedo, hispanic health, lifestyle medicine, mindfulness, National Cancer Institute, nutrition, precision medicine, Sylvester Comprehensive Cancer Center