Early in his career, Vinayak Venkataraman, MD, noticed that one group of patients was putting on a brave face in his sarcoma clinic. In conversations with nurses and social workers, he learned that his young adult patients were struggling with physical, emotional, and social challenges even if they sometimes didn’t tell him directly.
“Patients can be formal with their physicians,” Venkataraman observes. Visits with physicians are often focused on scan results, treatment side effects, and determining next steps in the cancer treatment plan. “You get the whole picture through the conversations they have with different clinicians.”
He observed that the declines in physical health, function, and agency experienced by young adults facing sarcoma were disrupting their social relations and overall sense of wellbeing.
Trained as both an internal medicine doctor and a pediatrician, Venkataraman has always carefully considered the various forces outside the clinic that might affect treatment outcomes. During his residency, he worked with many adolescents and saw firsthand the challenges they faced in a healthcare system divided between adult and pediatric teams. It became his mission to serve these underserved patients.
This is why Venkataraman decided to join efforts with physicians and researchers in Dana-Farber’s Sarcoma Center and the Jimmy Fund Clinic to host a focus group for their young adult patients. What he heard there mirrored much of what he knew from his career, his clinic, and the conversations with team members who cared for his patients.
One patient in the focus group described the isolation they felt because their energy had not returned to the same level prior to treatment. They sometimes needed to use a wheelchair to get around. “I feel so jealous of people who are able to walk around and just go places with their legs,” they said.
They touched on a key theme that arose from the conversation: the transition out of active treatment was particularly fraught. “When patients have a lot of intensity and a set plan, they can put their heads down and get through it,” Venkataraman explains. “Then treatment is over and they’re supposed to transition back to ‘normal life,’ but that ‘normal’ looks very different.”
Patient Perspectives Guide Solutions
It wasn’t new information to Venkataraman. Nationally, 25% of adolescent and young adult cancer survivors report a mobility disability and 9% report a self-care disability – both rates are higher than older cancer survivors.
Hearing their testimony spurred Venkataraman to find a way to address the root cause of the challenges faced by young adults. He knew that exercise could help. Research in adults with cancer has shown that aerobic and resistance exercise training can improve physical function, reduce treatment side effects, and promote quality of life in cancer survivors. Recent trials have also suggested that exercise could lower the risk of recurrence.
The challenge is that many patients do not follow a regular exercise regimen. According to Michael Carrrier, DPT, program manager for Health and Wellness in the Leonard P. Zakim Center for Integrative Therapies and Healthy Living, that makes sense.
For most people, he notes, starting an exercise program can be like assembling furniture – screws and wood scattered all over the floor with no help but a confusing instruction manual. “You’re looking at all this stuff and saying, ‘Gosh, where do I even start?’ Add in a cancer diagnosis and all the variables that come with it, and that’s more than enough reason to give people pause, and delay or even avoid starting any form of exercise altogether.”
Patients are often encouraged to pursue exercise or physical therapy on their own or at an outside facility. By expanding specialized opportunities for exercise at the Zakim Center, Carrier hopes to remove the guess work for people with a cancer diagnosis, and to bring its benefits to as many people as possible. So, when Venkataraman approached him about a trial exercise program for young adults and adolescents, Carrier was quick to say yes.
A Promising Trial
The study aims to determine how an integrated exercise program might look at a cancer center. A triage program and a meeting with Carrier places patients with sarcoma ages 15 – 39 into three groups: one that needs rehabilitation before exercise can begin, one that needs supervised exercise training, and another that will be offered unsupervised exercise training with regular virtual check-ins.
During the training, Venkataraman and Carrier will work with Chao Cao, PhD, MPH, to gather data and track how effective personalized exercise training is in improving physical function. Cao is uniquely positioned to study the effects of exercise in large groups of people and played a crucial role in designing the trial.
He began his academic journey at the Beijing Sport University where much of the research was applied to the performance of China’s Olympic athletes. While he was surrounded by world-class athletes on campus, he noticed a sharp contrast in the surrounding neighborhoods, where many people were not physically active and lacked guidance on how to exercise safely and effectively. He decided to change course, coming to the United States to study population sciences and metabolism. Like Carrier, he is committed to bringing the benefits of exercise to as many people as possible.
Cao sees parallels between patients with cancer and athletes who have had a traumatic injury. “There is a similar trepidation,” he says. “Both groups need personalized guidance and support to return to normal daily life and, ideally, become even stronger than before.”
Together, these researchers hope that enthusiastic participation in the trial program and the data they gather will encourage further funding for building integrated exercise programs in centers across the nation.
In his two years at the Zakim Center, Carrier has seen the power of Dana-Farber’s programming firsthand. A patient once told him, “The great doctors at Dana-Farber saved my life, but the Zakim Center gave me my life back.”
Physicians at Dana-Farber also appreciate the importance of this resource. “The power of this collaboration lies in the ability to leverage the existing framework of the Zakim Center,” Venkataraman explains.
Cao agrees. “Not every university or hospital can offer this foundation for a clinical exercise program,” he says.
For Carrier, this work is about expanding what Dana-Farber and the Zakim Center can do for patients. “Every day I walk into work, it just feels like a special place,” he observes. “There is a personal touch at Dana-Farber that is unlike anything I’ve experienced in healthcare.”