A novel community partnership is helping to deliver a full range of support resources to UT Southwestern pancreatic cancer patients.
The Simmons Comprehensive Cancer Center has joined forces with the nonprofit Pancreatic Cancer Action Network—a nationwide research, patient support, community engagement, and advocacy organization—to ensure at the outset of treatment that patients and their loved ones will be able to connect with any help they may need during the course of their cancer journey. The two organizations worked side-by-side in developing the Patient/Family Support Session, a lunchtime meeting at which UT Southwestern professionals and the advocacy organization’s local affiliate volunteers offer education about the roles of patients’ medical and supportive care providers, and guidance on how to navigate to a host of community resources. Typically during their first clinic visit, patients and family members attend the lunchtime session with UT Southwestern staff and the volunteers, while physicians in the Pancreatic Cancer Multidisciplinary Program meet to evaluate each case and determine treatment recommendations.
The Patient/Family Support Session was conceived to address the flood of information and emotions that can overwhelm patients and their caregivers after a diagnosis of pancreatic cancer, says volunteer Zach Weismann, Pancreatic Cancer Action Network Dallas-Fort Worth Affiliate Chair. “Cancer can feel very isolating; it can feel like you against the world,” he says. Session participants, who receive a printed packet of materials for reference, don’t need to understand all the resources at that moment, but just need to know they will be there when needed.
The learning curve can be fast and steep for patients, says Mr. Weismann, who lost his mother to pancreatic cancer in 2014. “For an average individual, dealing with cancer for the first time, you have this whole new vernacular,” he says. “I remember, with my mom, Googling ‘oncology’ and realizing there are multiple kinds of oncologists.”
The nonprofit’s resources address a host of concerns—for instance, the organization’s national Clinical Trial Finder can help patients find a study that might be appropriate for their medical and personal circumstances, if no such study is available at UT Southwestern. Patients also can be assigned a Patient Central Associate, available by phone and email, to provide personalized education and support.
“There is a lot of information available about pancreatic cancer, and it can be difficult for patients and their families to stay up-to-date,” says Kate Dishman, manager of Patient Services marketing at the Pancreatic Cancer Action Network. “This is why our free information and services are personalized—to ensure patients are empowered with the information they need to make the best treatment decisions. With the support of institutions such as UT Southwestern, we are able to reach more patients and provide these valuable resources.”
With a nationwide scope, the patient advocacy group’s resources can be especially helpful to a number of pancreatic cancer patients who seek care at UT Southwestern from out of town and who might not be able to regularly use the services the Cancer Center provides, says social worker Catherine Credeur, LMSW, OSW-C.
The roles of the Pancreatic Cancer Action Network and UT Southwestern in the Patient/Family Support Session dovetail nicely, notes Mr. Weismann, adding that the program can serve as a model for other hospitals across the U.S. “It sounds so simple, just providing people (at a hospital) with our resources, but you’d be amazed at how infrequently it happens.”
The educational session also allows the Multidisciplinary Program’s supportive services team, which includes a social worker, dietitian, and music therapist, to reach out to patients. “A lot of people don’t really understand what social workers do, what dietitians do. Many people are not familiar with music therapy,” Ms. Credeur says. “We talk about how we are a complement to their potential treatment, how our disciplines weave into that to support their treatment and also focus not just on extending life, but the quality of life.”
The session helps the supportive services team build rapport with patients and families, making it easier for them to reach out when help is needed, says clinical dietitian Shelli Hardy, MCN, RD, LD. It also gives patients the tools they need to address possible symptoms proactively, before they arise or interfere with their treatment.
“You have to be proactive in this kind of setting,” Ms. Hardy says. “At other medical centers you often don’t see patients until they’re already having a problem, and it’s hard to work from a deficit, such as malabsorption (of nutrients) or a 10 percent weight loss.”
Patients and caregivers at the session also learn about assistance in many other areas, such as pain management, gastrointestinal side effects, and physical and occupational therapy. “All these pieces are really important to a patient’s journey and quality of life,” says Dr. Rebecca Minter, Director of the Pancreatic Cancer Multidisciplinary Program. Knowing the tools available to assist them is vital to patients’ well-being before, during, and after treatment, she adds. “There are a lot of things patients actually have control over, at a time when they feel like they have no control.”